2016 ALZHEIMER’S DISEASE
FACTS AND FIGURES
Includes a Special Report on
the Personal Financial Impact
of Alzheimer’s on Families
About this report
2016 Alzheimer’s Disease Facts and Figures is a statistical resource for
U.S. data related to Alzheimer’s disease, the most common cause of
dementia, as well as other dementias. Background and context for
interpretation of the data are contained in the Overview. This information
includes descriptions of the various causes of dementia and a summary
of current knowledge about Alzheimer’s disease. Additional sections
address prevalence, mortality and morbidity, caregiving, and use and
costs of health care, long-term care and hospice. The Special Report
discusses the personal financial impact of Alzheimer’s disease on families.
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
Specific information in this year’s
Alzheimer’s Disease Facts and Figures includes:
• Revised criteria and guidelines for diagnosing
Alzheimer’s disease from the National Institute on Aging
and the Alzheimer’s Association.
• Overall number of Americans with Alzheimer’s disease
nationally and for each state.
• Proportion of women and men with Alzheimer’s and
other dementias.
• Estimates of lifetime risk for developing Alzheimer’s
disease.
• Number of deaths due to Alzheimer’s disease nationally
and for each state, and death rates by age.
• Number of family caregivers, hours of care provided,
economic value of unpaid care nationally and for each
state, and the impact of caregiving on caregivers.
• Use and costs of health care, long-term care and hospice
care for people with Alzheimer’s disease and other
dementias.
• The personal financial impact of Alzheimer’s on families,
including annual costs and the effect on family income.
The Appendices detail sources and methods used to derive
statistics in this report.
This report frequently cites statistics that apply to
individuals with all types of dementia. When possible, specific
information about Alzheimer’s disease is provided;
in other cases, the reference may be a more general one
of “Alzheimer’s disease and other dementias.”
2016 Alzheimer’s Disease Facts and Figures
1
Contents
Overview of Alzheimer’s Disease
Dementia 5
Alzheimer’s Disease 8
Symptoms
8
Diagnosis
8
Brain Changes Associated with Alzheimer’s Disease
Mild Cognitive Impairment (MCI): A Potential Precursor to Alzheimer’s Disease
9
9
Genetic Abnormalities That Cause Alzheimer’s Disease
10
Risk Factors for Alzheimer’s Disease
10
Treatment of Alzheimer’s Disease 13
Living with Alzheimer’s Disease
13
A Modern Diagnosis of Alzheimer’s Disease: Revised Criteria and Guidelines
14
Prevalence
Prevalence of Alzheimer’s Disease and Other Dementias in the United States
17
Estimates of the Number of People with Alzheimer’s Disease by State
19
Incidence of Alzheimer’s Disease
21
Lifetime Risk of Alzheimer’s Disease 22
Trends in the Prevalence and Incidence of Alzheimer’s Disease
22
Looking to the Future 23
Growth of the Oldest-Old Population
24
Mortality and Morbidity
Deaths from Alzheimer’s Disease
26
Public Health Impact of Deaths from Alzheimer’s Disease 27
State-by-State Deaths from Alzheimer’s Disease
27
Alzheimer’s Disease Death Rates
29
2
Duration of Illness from Diagnosis to Death
29
Burden of Alzheimer’s Disease
29
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
Caregiving
Unpaid Caregivers
32
Who Are the Caregivers?
32
Caregiving and Women
33
Caregiving Tasks
33
Duration of Caregiving
35
Hours of Unpaid Care and Economic Value of Caregiving
35
Impact of Alzheimer’s Disease Caregiving 36
Interventions Designed to Assist Caregivers
40
Paid Caregivers
41
Direct-Care Workers for People with Alzheimer’s Disease and Other Dementias
41
Shortage of Geriatric Health Care Professionals in the United States
43
Use and Costs of Health Care, Long-Term Care and Hospice Total Cost of Health Care, Long-Term Care and Hospice 45
Use and Costs of Health Care Services
47
Use and Costs of Long-Term Care Services
51
Use and Costs of Hospice Care
56
Projections for the Future
56
Special Report: The Personal Financial Impact of Alzheimer’s Disease on Families
Alzheimer’s Association Survey
58
Impact on Families 59
Out-of-Pocket Expenses Incurred by Care Contributors 59
Impact on Financial Security and Household Expenses 60
Impact on Food Security 62
Impact on Care Contributor Employment 62
Impact on Saving and Spending by Household Income
63
Out-of-Pocket Expenses as a Percentage of Household Income
65
Lack of Knowledge About the Roles of Medicare and Medicaid
65
Toward Solutions
66
Conclusion
67
Appendices
End Notes 67
References 70
Contents
3
OVE RVI EW OF AL ZH E I M E R’S DI SEASE
Alzheimer’s disease
is the most common
cause of dementia.
4
Alzheimer’s disease is a degenerative brain
disease and the most common cause of
dementia.1-2 Dementia is characterized by a
decline in memory, language, problem-solving
and other cognitive skills that affects a person’s
ability to perform everyday activities. This
decline occurs because nerve cells (neurons)
in parts of the brain involved in cognitive
function have been damaged or destroyed.
In Alzheimer’s disease, the damage and
destruction of neurons eventually affect other
parts of the brain, including those that enable
a person to carry out basic bodily functions
such as walking and swallowing. People in the
final stages of the disease are bed-bound and
require around-the-clock care. Alzheimer’s
disease is ultimately fatal.
Dementia
Physicians may refer to the Diagnostic and Statistical
Manual of Mental Disorders (DSM) to guide them in
determining if an individual has dementia, and, if so,
what may be the cause. Based on the latest DSM
criteria,3 dementia is classified as a major neurocognitive disorder because it interferes with both
cognitive function and performing everyday activities.
Cognitive function refers to memory, speech, language,
judgment, reasoning, planning and other thinking
abilities. Examples of everyday activities are making
a meal, paying bills and traveling to a store to make
a purchase.
When an individual has symptoms of dementia, such
as memory or language problems, a physician will
conduct tests to identify the cause. Different causes
of dementia are associated with distinct symptom
patterns and brain abnormalities, as described in
Table 1. Studies indicate that many people with
dementia, especially those in the older age groups,
have brain abnormalities associated with more than
one cause of dementia.4-8 This condition is called
mixed dementia.
In some cases, individuals with symptoms of dementia
do not actually have dementia, but instead have a
condition whose symptoms mimic those of dementia.
Common causes of dementia-like symptoms are
depression, delirium, side effects from medications,
thyroid problems, certain vitamin deficiencies and
excessive use of alcohol. Unlike dementia, these
conditions often may be reversed with treatment. One
meta-analysis, a method of analysis in which results of
multiple studies are examined, reported that 9 percent
of people with dementia-like symptoms did not in fact
have dementia, but had other conditions that were
potentially reversible.9
Overview of Alzheimer’s Disease
5
TABL E 1
Causes of Dementia and Associated Characteristics*
Cause
Characteristics
Alzheimer’s
disease
Most common cause of dementia; accounts for an estimated 60 percent to 80 percent of cases. About half of
these cases involve solely Alzheimer’s pathology; many of the remaining cases have evidence of pathologic
changes related to other dementias. This is called mixed dementia (see mixed dementia in this table).
Difficulty remembering recent conversations, names or events is often an early clinical symptom; apathy and
depression are also often early symptoms. Later symptoms include impaired communication, disorientation,
confusion, poor judgment, behavior changes and, ultimately, difficulty speaking, swallowing and walking.
Revised criteria and guidelines for diagnosing Alzheimer’s were proposed and published in 2011 (see pages
14-15). They recommend that Alzheimer’s be considered a slowly progressive brain disease that begins well
before clinical symptoms emerge.
The hallmark pathologies of Alzheimer’s are the progressive accumulation of the protein fragment betaamyloid (plaques) outside neurons in the brain and twisted strands of the protein tau (tangles) inside neurons.
These changes are eventually accompanied by the damage and death of neurons.
Vascular
dementia
Previously known as multi-infarct or post-stroke dementia, vascular dementia is less common as a sole cause of
dementia than Alzheimer’s, accounting for about 10 percent of dementia cases. However, it is very common in
older individuals with dementia, with about 50 percent having pathologic evidence of vascular dementia
(infarcts). In most cases, the infarcts coexist with Alzheimer’s pathology (see mixed dementia in this table).10
Impaired judgment or impaired ability to make decisions, plan or organize is more likely to be the initial
symptom, as opposed to the memory loss often associated with the initial symptoms of Alzheimer’s. In addition
to changes in cognition, people with vascular dementia can have difficulty with motor function, especially slow
gait and poor balance.
Vascular dementia occurs most commonly from blood vessel blockage or damage leading to infarcts (strokes) or
bleeding in the brain. The location, number and size of the brain injuries determine whether dementia will result
and how the individual’s thinking and physical functioning will be affected.
In the past, evidence of vascular dementia was used to exclude a diagnosis of Alzheimer’s (and vice versa).
That practice is no longer considered consistent with the pathologic evidence, which shows that the brain
changes of Alzheimer’s and vascular dementia commonly coexist. When evidence of two or more causes of
dementia are present at the same time, the individual is considered to have mixed dementia (see mixed
dementia in this table).
Dementia with
Lewy bodies
(DLB)
People with DLB have some of the symptoms common in Alzheimer’s, but are more likely to have initial or
early symptoms of sleep disturbances, well-formed visual hallucinations and slowness, gait imbalance or other
parkinsonian movement features. These features, as well as early visuospatial impairment, may occur in the
absence of significant memory impairment.
Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein in neurons. When they
develop in a part of the brain called the cortex, dementia can result. Alpha-synuclein also aggregates in the
brains of people with Parkinson’s disease (PD), in which it is accompanied by severe neuronal loss in a part of
the brain called the substantia nigra. While people with DLB and PD both have Lewy bodies, the onset of the
disease is marked by motor impairment in PD and cognitive impairment in DLB.
The brain changes of DLB alone can cause dementia, but very commonly brains with DLB have coexisting
Alzheimer’s pathology. In people with both DLB and Alzheimer’s pathology, symptoms of both diseases may
emerge and lead to some confusion in diagnosis. Vascular dementia can also coexist and contribute to the
dementia. When evidence of more than one dementia is present, the individual is said to have mixed
dementia (see mixed dementia in this table).
6
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
TABL E 1 (cont .)
Causes of Dementia and Associated Characteristics*
Cause
Characteristics
Mixed dementia
Characterized by the hallmark abnormalities of more than one cause of dementia — most commonly
Alzheimer’s combined with vascular dementia, followed by Alzheimer’s with DLB, and Alzheimer’s with vascular
dementia and DLB. Vascular dementia with DLB is much less common.5-6
Recent studies suggest that mixed dementia is more common than previously recognized, with about half
of older people with dementia having pathologic evidence of more than one cause of dementia.5-6 Recent
studies also show that the likelihood of having mixed dementia increases with age and is highest in the
oldest-old, people age 85 or older.
Frontotemporal
lobar degeneration (FTLD)
Includes dementias such as behavioral-variant FTLD, primary progressive aphasia, Pick’s disease, corticobasal
degeneration and progressive supranuclear palsy.
Typical early symptoms include marked changes in personality and behavior and/or difficulty with producing
or comprehending language. Unlike Alzheimer’s, memory is typically spared in the early stages of disease.
Nerve cells in the front (frontal lobe) and side regions (temporal lobes) of the brain are especially affected,
and these regions become markedly atrophied (shrunken). In addition, the upper layers of the cortex typically
become soft and spongy and have protein inclusions (usually tau protein or the transactive response DNAbinding protein).
The brain changes of FTLD may occur in those age 65 years and older, similar to Alzheimer’s disease, but most
people with this form of dementia develop symptoms at a younger age. About 60 percent of people with FTLD
are ages 45 to 60. FTLD accounts for about 10 percent of dementia cases.
Parkinson’s
disease (PD)
dementia
Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD.
In PD, alpha-synuclein aggregates appear in an area deep in the brain called the substantia nigra. The
aggregates are thought to cause degeneration of the nerve cells that produce dopamine.
The incidence of PD is about one-tenth that of Alzheimer’s.
As PD progresses, it often results in dementia secondary to the accumulation of Lewy bodies in the cortex
(similar to DLB) or the accumulation of beta-amyloid clumps and tau tangles (similar to Alzheimer’s disease).
CreutzfeldtJakob disease
This very rare and rapidly fatal disorder impairs memory and coordination and causes behavior changes.
Results from a misfolded protein (prion) that causes other proteins throughout the brain to misfold and
malfunction.
May be hereditary (caused by a gene that runs in one’s family), sporadic (unknown cause) or caused by
a known prion infection.
A specific form called variant Creutzfeldt-Jakob disease is believed to be caused by consumption of
products from cattle affected by mad cow disease.
Normal pressure
hydrocephalus
Symptoms include difficulty walking, memory loss and inability to control urination.
Accounts for less than 5 percent of dementia cases.11
Caused by impaired reabsorption of cerebrospinal fluid and the consequent build-up of fluid in the brain,
increasing pressure in the brain.
People with a history of brain hemorrhage (particularly subarachnoid hemorrhage) and meningitis are
at increased risk.
Can sometimes be corrected with surgical installation of a shunt in the brain to drain excess fluid.
* For more information on these and other causes of dementia, visit alz.org/dementia.
Overview of Alzheimer’s Disease
7
Alzheimer’s Disease
• Trouble understanding visual images and spatial
Alzheimer’s disease was first identified more than
100 years ago, but 70 years passed before it was
recognized as the most common cause of dementia, as
well as a major cause of death.12 Not until then did
Alzheimer’s disease become a significant area of
research. Although the research that followed has
revealed a great deal about Alzheimer’s, much is yet to
be discovered about the precise biological changes that
cause Alzheimer’s, why it progresses more quickly in
relationships.
• New problems with words when speaking or writing.
• Misplacing things and losing the ability to retrace
steps.
• Decreased or poor judgment.
• Withdrawal from work or social activities.
• Changes in mood and personality, including apathy
and depression.
• Increased anxiety, agitation and sleep disturbances.
some than in others, and how the disease can be
For more information about the symptoms of
prevented, slowed or stopped.
Alzheimer’s, visit alz.org/10signs.
Researchers believe that early detection of Alzheimer’s
The pace at which symptoms advance from mild to
will be key to preventing, slowing and stopping the
moderate to severe varies from person to person. As the
disease. The last 10 years have seen tremendous growth
disease progresses, cognitive and functional abilities
in research on early detection. This research spurred
decline. In the more advanced stages, people need help
the 2011 publication of new diagnostic criteria and
with basic activities of daily living, such as bathing,
guidelines for Alzheimer’s disease.
dressing, eating and using the bathroom; lose their
13-16
According to the
criteria, the brain changes of Alzheimer’s begin before
ability to communicate; fail to recognize loved ones; and
symptoms such as memory loss appear, whereas earlier
become bed-bound and reliant on around-the-clock
criteria require memory loss and a decline in thinking
care. When individuals have difficulty moving, they are
abilities for an Alzheimer’s diagnosis to be made.
more vulnerable to infections, including pneumonia
Because scientific evaluation of some components of
(infection of the lungs). Alzheimer’s-related pneumonia
the new criteria is ongoing, “Alzheimer’s disease” in
is often a contributing factor to the death of people with
this report refers to the disease as defined by the
Alzheimer’s disease (see page 26).
earlier criteria.
17
Diagnosis
Symptoms
No single, simple test exists to diagnose Alzheimer’s
Alzheimer’s disease symptoms vary among individuals.
disease. Instead, one’s physician, often with the help of a
The most common initial symptom is a gradually
neurologist, will use a variety of approaches and tools to
worsening ability to remember new information. This
help make a diagnosis. They include the following:
occurs because the first neurons to be damaged and
destroyed are usually in brain regions involved in
forming new memories. As neurons in other parts of
the brain are damaged and destroyed, individuals
experience other difficulties. The following are common
symptoms of Alzheimer’s:
•Obtaining a medical and family history from the
individual, including psychiatric history and history of
cognitive and behavioral changes.
•Asking a family member or other person close to the
individual to provide input about changes in thinking
skills or behavior.
• Memory loss that disrupts daily life.
•Conducting cognitive tests and physical and
• Challenges in planning or solving problems.
neurologic examinations.
• Difficulty completing familiar tasks at home, at work
or at leisure.
• Confusion with time or place.
8
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
•Having the individual undergo blood tests and brain
The brain changes associated with Alzheimer’s may
imaging to rule out other potential causes of dementia
begin 20 or more years18-21 before symptoms appear.
symptoms, such as a tumor or certain vitamin
When the initial changes occur, the brain compensates
deficiencies.
for them, enabling individuals to continue to function
Diagnosing Alzheimer’s requires a careful and
comprehensive medical evaluation. Although physicians
can almost always determine if a person has dementia,
it may be difficult to identify the exact cause. Several
days or weeks may be needed for the patient to
complete the required tests and examinations and for
the physician to interpret the results and make
a diagnosis.
Brain Changes Associated with Alzheimer’s Disease
A healthy adult brain has about 100 billion neurons,
each with long, branching extensions. These extensions
enable individual neurons to form connections with
other neurons. At such connections, called synapses,
information flows in tiny bursts of chemicals that are
released by one neuron and detected by a receiving
neuron. The brain contains about 100 trillion synapses.
They allow signals to travel rapidly through the brain’s
neuronal circuits, creating the cellular basis of
memories, thoughts, sensations, emotions, movements
and skills.
normally. As neuronal damage increases, the brain can
no longer compensate for the changes and individuals
show subtle cognitive decline. Later, neuronal damage is
so significant that individuals show obvious cognitive
decline, including symptoms such as memory loss or
confusion as to time or place. Later still, basic bodily
functions such as swallowing are impaired.
Mild Cognitive Impairment (MCI): A Potential
Precursor to Alzheimer’s Disease
MCI is a condition in which an individual has mild but
measurable changes in thinking abilities that are
noticeable to the person affected and to family
members and friends, but do not affect the individual’s
ability to carry out everyday activities. Approximately
15 percent to 20 percent of people age 65 or older
have MCI. 22 People with MCI, especially MCI involving
memory problems, are more likely to develop
Alzheimer’s and other dementias than people without
MCI. 23-24 A recent systematic review of 32 studies found
that an average of 32 percent of individuals with MCI
developed Alzheimer’s disease in 5 years. 25 This is
The accumulation of the protein beta-amyloid (called
similar to an earlier meta-analysis of 41 studies that
beta-amyloid plaques) outside neurons and the
found that among individuals with MCI who were
accumulation of an abnormal form of the protein tau
tracked for 5 years or longer, an average of 38 percent
(called tau tangles) inside neurons are two of several
developed dementia. 24 Identifying which individuals with
brain changes believed to contribute to the damage and
MCI are more likely to develop Alzheimer’s and other
destruction of neurons that result in memory loss and
dementias is a major goal of current research.
other symptoms of Alzheimer’s. As brain changes
advance, information transfer at synapses begins to fail,
the number of synapses declines, and neurons
eventually die. The accumulation of beta-amyloid is
believed to interfere with the neuron-to-neuron
communication at synapses and to contribute to cell
death. Tau tangles block the transport of nutrients and
other essential molecules inside neurons and are also
believed to contribute to cell death. The brains of
people with advanced Alzheimer’s disease show
inflammation, dramatic shrinkage from cell loss, and
widespread debris from dead and dying neurons.
The revised criteria and guidelines for Alzheimer’s
diagnosis13-16 (see pages 14-15) suggest that in some
cases MCI is actually an early stage of Alzheimer’s
(called MCI due to Alzheimer’s disease) or another form
of dementia. However, MCI can develop for reasons
other than Alzheimer’s, and MCI does not always lead to
dementia. In some individuals, MCI reverts to normal
cognition or remains stable. In other cases, such as
when a medication causes cognitive impairment, MCI is
mistakenly diagnosed. Therefore, it’s important that
people experiencing cognitive impairment seek help as
soon as possible for diagnosis and possible treatment.
Overview of Alzheimer’s Disease
9
Genetic Abnormalities That Cause Alzheimer’s Disease
Risk Factors for Alzheimer’s Disease
Genetic Mutations
With the exception of cases of Alzheimer’s caused by
A small percentage of Alzheimer’s cases (an estimated
genetic abnormalities, experts believe that Alzheimer’s,
1 percent or less)26 develop as a result of mutations to
like other common chronic diseases, develops as a
any of three specific genes. A genetic mutation is an
result of multiple factors rather than a single cause.
abnormal change in the sequence of chemical pairs that
make up genes. These mutations involve the gene for
the amyloid precursor protein (APP) and the genes for
the presenilin 1 and presenilin 2 proteins. Those
inheriting a mutation to the APP or presenilin 1 genes
are guaranteed to develop Alzheimer’s. Those inheriting
Age, Family History and the Apolipoprotein E
(APOE)-e4 Gene
The greatest risk factors for late-onset “sporadic”
Alzheimer’s are older age,32-33 having a family history of
Alzheimer’s34-37 and carrying the APOE-e4 gene.38-39
a mutation to the presenilin 2 gene have a 95 percent
Age
chance of developing the disease. Individuals with
Age is the greatest of these three risk factors. Most
mutations in any of these three genes tend to develop
people with Alzheimer’s disease are age 65 or older.
Alzheimer’s symptoms before age 65, sometimes as
People younger than 65 can have Alzheimer’s, but they
early as age 30, while the vast majority of individuals
are much less likely to develop the disease than older
with Alzheimer’s have late-onset disease, occurring at
individuals. As age increases, so does the likelihood of
age 65 or later.
having Alzheimer’s. For example, 15 percent of those
27
Down Syndrome
About 400,000 Americans have Down syndrome. 28
People with Down syndrome are born with an
additional full or partial copy of chromosome 21, one
with Alzheimer’s are ages 65-74, while 44 percent are
ages 75-84 (see page 17). Although older age is a risk
factor, Alzheimer’s is not a normal part of aging, and
older age alone is not sufficient to cause the disease.
of the 23 human chromosomes. People with Down
Family History of Alzheimer’s Disease
syndrome are at high risk of developing a type of
A family history of Alzheimer’s is not necessary for an
dementia that is either the same as or similar to that
individual to develop the disease. However, individuals
caused by Alzheimer’s disease. Scientists are not certain
who have a parent, brother or sister with Alzheimer’s
why people with Down syndrome are at higher risk, but
are more likely to develop the disease than those who
it may be related to the additional full or partial copy of
do not have a first-degree relative with Alzheimer’s.34,40
chromosome 21. This chromosome includes a gene
Those who have more than one first-degree relative
that encodes for the production of APP, which in
with Alzheimer’s are at even higher risk.37 When
people with Alzheimer’s is cut into beta-amyloid
diseases run in families, heredity (genetics), shared
fragments that go on to accumulate into the hallmark
environmental and lifestyle factors, or both, may play a
amyloid plaques of Alzheimer’s.
role. The increased risk associated with having a family
By age 40, most people with Down syndrome have
significant levels of beta-amyloid plaques and tau tangles
in their brains.29 As with all adults, advancing age increases
the likelihood that a person with Down syndrome will
exhibit symptoms of Alzheimer’s. Studies suggest that
many people with Down syndrome will begin showing
symptoms of dementia in their early to mid-50s and that
more than 75 percent of adults with Down syndrome
over age 65 have Alzheimer’s disease.30-31
10
history of Alzheimer’s is not entirely explained by
whether the individual has inherited the APOE-e4
risk gene.
APOE-e4 Gene
The APOE gene provides the blueprint for a protein
that transports cholesterol in the bloodstream.
Everyone inherits one of three forms of the APOE
gene — e2, e3 or e4 — from each parent. The e3
form is the most common, and the e2 form the least
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
common. The e4 form is somewhat more common than
to have a limited effect on the overall prevalence of
the e2 form. The estimated distribution of the e2, e3
Alzheimer’s because they are rare or only slightly
and e4 forms of APOE is shown in Table 2.
increase risk.45
Modifiable Risk Factors
Although risk factors such as age and family history
TABL E 2
Estimated Percentages of the
U.S. Population with the e2, e3 and e4 Forms
of the Apolipoprotein E (APOE) Gene*
APOE Form
Percentage
e2/e20.5
e2/e311
e2/e42
e3/e361
e3/e423
e4/e42
cannot be changed, other risk factors can be changed,
or modified, to reduce risk of cognitive decline and
dementia. A recent report46 evaluating the state of the
evidence on the effects of modifiable risk factors on
cognitive decline and dementia concluded that there is
sufficiently strong evidence, from a population-based
perspective, that regular physical activity and
management of cardiovascular risk factors (especially
diabetes, obesity, smoking and hypertension) reduce the
risk of cognitive decline and may reduce the risk of
dementia. It also concluded that there is sufficiently
strong evidence that a healthy diet and lifelong learning/
*One form of the APOE gene is inherited from each parent. People with
one or two copies of e4 are at higher risk of developing Alzheimer’s than
individuals who do not have a copy of e4.
cognitive training may reduce the risk of cognitive
Created from data from Raber et al.41
regarding modifiable risk factors for cognitive decline
decline. A second report examining the evidence
reached similar conclusions.47
Having the e4 form increases one’s risk of developing
Cardiovascular Disease Risk Factors
Alzheimer’s compared with having the e3 form, while
Growing evidence suggests that the health of the brain
having the e2 form may decrease one’s risk compared
is closely linked to the overall health of the heart and
with having the e3 form. Those who inherit one copy of
blood vessels. The brain is nourished by one of the
the e4 form have a three-fold higher risk of developing
body’s richest networks of blood vessels. A healthy
Alzheimer’s than those without the e4 form, while those
heart helps ensure that enough blood is pumped
who inherit two copies of the e4 form have an
through these blood vessels, and healthy blood vessels
8- to 12-fold higher risk.40,42-43 In addition, those with
help ensure that the brain is supplied with the oxygen-
the e4 form are more likely to develop Alzheimer’s at a
and nutrient-rich blood it needs to function normally.
younger age than those with the e2 or e3 forms of the
APOE gene.44 Researchers estimate that 40 percent to
65 percent of people diagnosed with Alzheimer’s have
one or two copies of the APOE-e4 gene.38-39
Many factors that increase the risk of cardiovascular
disease are also associated with a higher risk of
dementia. These factors include smoking,48-50 obesity in
midlife51-53 and diabetes.54-57 Some studies propose that
Unlike inheriting a genetic mutation that causes
impaired glucose processing (a precursor to diabetes)
Alzheimer’s, inheriting the e4 form of the APOE gene
may also result in an increased risk for dementia.51,58-59
does not guarantee that an individual will develop
Midlife hypertension51,60-62 and midlife high
Alzheimer’s. This is also true for more than 20 recently
cholesterol63-64 are also implicated as risk factors
identified genes that appear to affect the risk of
for dementia.
Alzheimer’s. These recently identified genes are believed
Overview of Alzheimer’s Disease
11
Conversely, factors that protect the heart may also
Social and Cognitive Engagement
protect the brain and reduce the risk of developing
Additional studies suggest that remaining socially and
Alzheimer’s and other dementias. Physical activity57,65-66
mentally active throughout life may support brain
appears to be one of these factors. In addition,
health and possibly reduce the risk of Alzheimer’s and
emerging evidence suggests that consuming a diet
other dementias.81-93 Remaining socially and mentally
that benefits the heart, such as one that is lower in
active may help build cognitive reserve, but the exact
saturated fats, may be associated with reduced
mechanism by which this may occur is unknown. More
Alzheimer’s and dementia risk.
research is needed to better understand how social and
57,67-71
Researchers have begun studying combinations of
health factors (hypertension, for instance) and lifestyle
cognitive engagement may affect biological processes
to reduce risk.
behaviors (physical activity being an example) to learn
Traumatic Brain Injury (TBI)
whether combinations of risk factors better identify
TBI is the disruption of normal brain function caused
Alzheimer’s and dementia risk than individual
by a blow or jolt to the head or penetration of the skull
risk factors.72
by a foreign object. According to the Centers for
Disease Control and Prevention (CDC),94 an estimated
Education
People with fewer years of formal education are at
higher risk for Alzheimer’s and other dementias than
those with more years of formal education.73-77 Some
1.7 million Americans will sustain a TBI in any given year.
Falls and motor vehicle accidents are the leading causes
of TBIs.94-95
researchers believe that having more years of education
About 75 percent of TBIs are mild, meaning that the
builds a “cognitive reserve” that enables individuals to
resulting confusion, disorientation or lack of
better compensate for changes in the brain that could
consciousness lasts 30 minutes or less. Moderate TBIs
result in symptoms of Alzheimer’s or another
result in a loss of consciousness or post-traumatic
dementia.76,78-79 According to the cognitive reserve
amnesia that lasts more than 30 minutes but less than
hypothesis, having more years of education increases
24 hours. If loss of consciousness or post-traumatic
the connections between neurons in the brain and
amnesia lasts 24 hours or more, the TBI is considered
enables the brain to compensate for the early changes
severe. Moderate and severe TBIs increase the risk of
of Alzheimer’s by using alternate routes of neuron-to-
developing Alzheimer’s disease and other dementias.
neuron communication to complete a cognitive task.
Compared with no TBI, moderate TBI is associated with
Some scientists believe other factors may contribute to
or explain the increased risk of dementia among those
twice the risk of developing Alzheimer’s and other
dementias, and severe TBI with 4.5 times the risk.96
with lower educational attainment. These factors
Individuals who have experienced repeated TBIs are at
include an increased likelihood of having occupations
higher risk of dementia, cognitive impairment and
that are less mentally stimulating. In addition, lower
neurodegenerative disease than individuals who have
educational attainment may reflect lower
not experienced TBI.97-105 Some of these conditions,
socioeconomic status, which may increase one’s
such as chronic traumatic encephalopathy (CTE), can
likelihood of poor nutrition and decrease one’s ability
only be definitively diagnosed upon autopsy. CTE is
to afford health care or obtain treatments, such as
associated with repeated blows to the head, such as
treatments for cardiovascular risk factors.
those that may occur while playing contact sports. CTE
80
80
causes the brain to deteriorate over time. Physicians
and researchers are only beginning to understand many
aspects of CTE. For that reason, there is not yet
consensus on the symptoms of CTE. Other than
12
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
repeated brain trauma, the causes and risk factors for
daily living, or overall quality of life. They also may be
CTE remain unknown. Currently, there is no test to
used with the goal of reducing behavioral symptoms
determine if someone has CTE and no treatment or
such as depression, apathy, wandering, sleep
cure. The only known way to prevent it is to avoid
disturbances, agitation and aggression. Examples
repeated head injuries.
include art therapy, activity-based therapy and memory
Individuals can decrease their risk of TBI by wearing
seatbelts while traveling, avoiding repeated blows to
the head in contact sports, wearing helmets during
training. As with current pharmacologic therapies,
non-pharmacologic therapies have not been shown to
alter the course of Alzheimer’s disease.
activities such as bicycling, and ensuring one’s living
Systematic reviews of published research on
environment is well lit and free of tripping hazards.
non-pharmacologic therapies have found that some,
Treatment of Alzheimer’s Disease
Pharmacologic Treatment
None of the pharmacologic treatments (medications)
available today for Alzheimer’s disease slows or stops
the damage and destruction of neurons that cause
Alzheimer’s symptoms and make the disease fatal.
The six drugs approved by the U.S. Food and Drug
Administration (FDA) for the treatment of Alzheimer’s
temporarily improve symptoms by increasing the
amount of chemicals called neurotransmitters in the
brain. A1 The effectiveness of these drugs varies from
person to person.
In the decade of 2002-2012, 244 drugs for
Alzheimer’s were tested in clinical trials registered with
clinicaltrials.gov, a National Institutes of Health registry
of publicly and privately funded clinical studies.106 Only
one of the 244 drugs successfully completed clinical
trials and went on to receive approval from the FDA.
Many factors contribute to the difficulty of developing
such as exercise and cognitive activity (for example,
gardening, word games, listening to music and cooking)
show promise.107 However, compared with
pharmacologic treatments, relatively few
non-pharmacologic therapies have been tested in
multiple large randomized controlled studies or shown
consistent results. In randomized controlled studies,
participants are randomly assigned to receive a therapy
or not receive a therapy, and results from the two
groups are compared. Additional research on
non-pharmacologic therapies is needed to better
evaluate their effectiveness.
Living with Alzheimer’s Disease
Despite the lack of disease-modifying therapies for
Alzheimer’s, studies have consistently shown that active
management of Alzheimer’s and other dementias can
improve quality of life through all stages of the disease
for individuals with dementia and their caregivers.108-110
Active management includes:
effective treatments for Alzheimer’s. These factors
• Appropriate use of available treatment options.
include the high cost of drug development, the
• Effective management of coexisting conditions.
relatively long time needed to observe whether an
• Coordination of care among physicians, other health
investigational treatment affects disease progression,
care professionals and lay caregivers.
and the structure of the brain, which is protected by
• Participation in activities and/or adult day care
the blood-brain barrier, through which only very
programs.
specialized small-molecule drugs can cross.
• Taking part in support groups and supportive services.
Non-Pharmacologic Therapy
To learn more about each of these ways of helping to
Non-pharmacologic therapies are those that do not
manage Alzheimer’s, as well as practical information for
involve medication. Non-pharmacologic therapies are
living with the disease and being a caregiver for an
often used with the goal of maintaining or improving
individual with Alzheimer’s, visit alz.org.
cognitive function, the ability to perform activities of
Overview of Alzheimer’s Disease
13
A Modern Diagnosis
of Alzheimer’s Disease:
Revised Criteria and
Guidelines
In 2011, the National
Institute on Aging (NIA) and
the Alzheimer’s Association
proposed revised criteria and
guidelines for diagnosing
Alzheimer’s disease.13-16
These criteria and guidelines
update diagnostic criteria and
guidelines published in 1984
by the National Institute of
Neurological Disorders and
Stroke and the Alzheimer’s
Association, then known as
the Alzheimer’s Disease and
Related Disorders Association
(ADRDA).17 In 2012, the NIA
and the Alzheimer’s Association
also developed new guidelines
to help pathologists describe
and categorize the brain
changes associated with
Alzheimer’s disease and other
dementias on autopsy.111
Differences Between the Original and Revised Criteria
The 1984 diagnostic criteria and guidelines were based chiefly on a doctor’s clinical
judgment about the cause of an individual’s symptoms, taking into account reports
from the individual, family members and friends; results of cognitive tests; and
general neurological assessment. The new criteria and guidelines incorporate three
notable changes:
(1) They identify two stages of Alzheimer’s disease: mild cognitive impairment (MCI)
due to Alzheimer’s disease and dementia due to Alzheimer’s disease. In contrast, for
Alzheimer’s disease to be diagnosed using the 1984 criteria, clear dementia must
have already become apparent.
(2) They propose — for research purposes — criteria for a preclinical phase of
Alzheimer’s disease, occurring before symptoms such as memory loss develop.
(3) They incorporate biomarker tests. A biomarker is a biological factor that can be
measured to indicate the presence or absence of disease, or the risk of developing
a disease. For example, blood glucose level is a biomarker of diabetes, and
cholesterol level is a biomarker of heart disease risk. Levels of certain proteins in
fluid (for example, levels of beta-amyloid and tau in the cerebrospinal fluid and the
presence of particular groups of proteins in blood) are among several factors being
studied as possible biomarkers for Alzheimer’s. Finding a simple and inexpensive
test, such as a blood test, would be ideal for patients, physicians and scientists.
Research is underway to develop such a test, but no test to date has shown the
accuracy and reliability needed to diagnose Alzheimer’s.
The Stages of Alzheimer’s Disease Identified by the 2011 Criteria and Guidelines
The stages of Alzheimer’s disease identified by the 2011 criteria and guidelines are
MCI due to Alzheimer’s disease and dementia due to Alzheimer’s disease. In addition,
preclinical Alzheimer’s disease is identified as a possible stage for research purposes.
Dementia Due to Alzheimer’s Disease — This stage is characterized by noticeable
memory, thinking and behavioral symptoms that impair a person’s ability to
function in daily life.
MCI Due to Alzheimer’s Disease — People with MCI show cognitive decline
greater than expected for their age and education level, but this decline does not
significantly interfere with everyday activities. Approximately 15 percent to
20 percent of people age 65 or older have MCI. 22 Further cognitive decline is more
14
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
likely among individuals whose MCI involves memory problems (called amnestic
MCI) than among those whose MCI does not involve memory problems.
Approximately two-thirds of those with MCI have amnestic MCI.112 About
one-third of people with MCI develop dementia, most commonly Alzheimer’s, in
5 years. 25 However, some people with MCI, primarily those without memory
problems, experience an improvement in cognition or revert to normal
cognitive status.113 It is unclear why some people with MCI develop dementia
and others do not.
Proposed for Research: Preclinical Alzheimer’s Disease — Although the 2011 criteria
and guidelines propose preclinical disease as a potential stage of Alzheimer’s, they
do not establish diagnostic criteria that doctors can use now. Rather, they state
that additional research is needed before this stage of Alzheimer’s can be
identified. In this proposed stage, individuals may have measurable changes in
the brain, cerebrospinal fluid and/or blood (biomarkers) that indicate the earliest
signs of disease, but they may have not yet developed noticeable symptoms such
as memory loss. This proposed preclinical or presymptomatic stage reflects
current thinking that Alzheimer’s-related brain changes may begin 20 years or
more before symptoms occur.18-20 Ongoing research continues to explore this
possible stage of the disease.
Biomarker Tests
Dementia and MCI due to Alzheimer’s disease can be accurately diagnosed by a
physician based on symptoms, family interviews and current diagnostic tests, but
the 2011 criteria and guidelines recommend biomarker tests if a physician is unsure
of the cause of cognitive decline. The criteria identify two biomarker categories:
(1) biomarkers showing the level of beta-amyloid accumulation in the brain and
(2) biomarkers showing that neurons in the brain are injured or actually degenerating.
Many researchers believe that future treatments to slow or stop the progression
of Alzheimer’s disease and preserve brain function (called “disease-modifying”
treatments) will be most effective when administered early in the disease, either at
the MCI stage or during the proposed preclinical stage. Biomarker tests will be
essential to identify which individuals are in these early stages and should receive
disease-modifying treatment when it becomes available. They also will be critical
for monitoring the effects of treatment. Furthermore, biomarkers will play an
important role in developing treatments because they will enable researchers to
identify which individuals to enroll in clinical trials of potential new therapies. By
using biomarkers, researchers can enroll only those individuals with the brain
changes that treatments target.114
The most effective biomarker test or combination of tests may differ depending on
the stage of the disease and other factors.115
Overview of Alzheimer’s Disease
15
PRE VALE NCE
1in9
people age 65 and older
has Alzheimer’s disease.
16
Millions of Americans have Alzheimer’s disease
and other dementias. As the size and proportion
of the U.S. population age 65 and older
continue to increase, the number of Americans
with Alzheimer’s disease and other dementias
will grow. This number will escalate rapidly in
coming years, as the baby boom generation has
begun to reach age 65 and beyond, the age
range of greatest risk of Alzheimer’s. In fact, the
first members of the baby boom generation turn
70 in 2016.
FIGURE 1
Ages of People with Alzheimer’s Disease
in the United States, 2016
•
•
•
•
85+ years, 37%
75-84 years, 44%
65-74 years, 15%
<65 years, 4%
The prevalence of Alzheimer’s disease refers to the
proportion of people in a population who have Alzheimer’s
Created from data from Hebert et al. 33, A4
at a given point in time. This section reports on the
number and proportion of people with Alzheimer’s disease
to describe the magnitude of the burden of Alzheimer’s on
the community and health care system. Incidence, the
number of new cases per year, is also provided as an
estimate of the risk of developing Alzheimer’s disease and
other dementias for different age groups. Estimates from
data from the 2010 U.S. Census and the Chicago Health
and Aging Project (CHAP), a population-based study of
chronic health diseases of older people.33
selected studies on the number and proportion of people
National estimates of the prevalence of all dementias
with Alzheimer’s and other dementias vary depending on
are not available from CHAP, but they are available from
how each study was conducted. Data from several studies
other population-based studies including the Aging,
are used in this section.
Demographics, and Memory Study (ADAMS), a
nationally representative sample of older adults.117-118, A5
Prevalence of Alzheimer’s Disease
and Other Dementias in the United States
Based on estimates from ADAMS, 14 percent of people
An estimated 5.4 million Americans of all ages have
Prevalence studies such as CHAP and ADAMS are
Alzheimer’s disease in 2016. This number includes an
designed so that everyone in the study is tested for
estimated 5.2 million people age 65 and older 33, A2 and
dementia. But in the community, only about half of those
approximately 200,000 individuals under age 65 who have
who would meet the diagnostic criteria for Alzheimer’s
younger-onset Alzheimer’s.116
disease and other dementias are diagnosed with dementia
• One in nine people age 65 and older (11 percent)
has Alzheimer’s disease.33,A3
• About one-third of people age 85 and older
(32 percent) have Alzheimer’s disease.33
• Eighty-one percent of people who have Alzheimer’s
disease are age 75 or older (Figure 1).33, A4
The estimated number of individuals age 65 and older with
age 71 and older in the United States have dementia.117
by a physician.119-121 Furthermore, as discussed in the
2015 Alzheimer’s Disease Facts and Figures Special Report,
fewer than half of those who have a diagnosis of
Alzheimer’s or another dementia in their medical records
or their caregivers report being told of the diagnosis.122-124
Because Alzheimer’s disease is underdiagnosed and
underreported, a large portion of Americans with
Alzheimer’s may not know they have it.
Alzheimer’s disease comes from a study using the latest
Prevalence
17
The estimates of the number and proportion of people
who have Alzheimer’s are based on commonly accepted
criteria for diagnosing Alzheimer’s disease that have been
used since 1984. These criteria are applicable only after
the onset of symptoms. But as described in the Overview
(see pages 14-15), revised criteria and guidelines by the
National Institute on Aging and the Alzheimer’s
Association published in 201113-16 propose that
Alzheimer’s begins before the onset of symptoms, which
is consistent with what most researchers now believe.
More study is needed to estimate how many people may
Differences Between Women and Men in
the Prevalence of Alzheimer’s Disease and
Other Dementias
More women than men have Alzheimer’s disease and
other dementias. Almost two-thirds of Americans with
Alzheimer’s are women.33, A6 Of the 5.2 million people
age 65 and older with Alzheimer’s in the United States,
3.3 million are women and 1.9 million are men.33, A6
Based on estimates from ADAMS, among people age 71
and older, 16 percent of women have Alzheimer’s
disease and other dementias compared with 11 percent
have MCI due to Alzheimer’s disease — and how many
of men.117,131
people may be in the stage of preclinical Alzheimer’s that
There are a number of potential reasons why more
has been proposed for research purposes. However, if
Alzheimer’s disease could be accurately detected before
symptoms develop, the number of people reported to
have Alzheimer’s disease would be much larger than what
is presented in this report.
Subjective Cognitive Decline
The experience of worsening or more frequent
confusion or memory loss (often referred to as
subjective cognitive decline) is one of the earliest
warning signs of Alzheimer’s disease and may be a way
to identify people who are at high risk of developing
Alzheimer’s and other dementias as well as MCI.125-127
Subjective cognitive decline does not refer to someone
occasionally forgetting their keys or the name of
someone they recently met; it refers to more serious
issues such as having trouble remembering how to do
things they have always done or forgetting things that
they would normally know. Not all of those who
experience subjective cognitive decline go on to
develop MCI or Alzheimer’s disease and other
dementias, but many do.128-129 Data from the 2013
Behavioral Risk Factor Surveillance System (BRFSS)
survey, which included questions on self-perceived
confusion and memory loss for people in 17 U.S. states,
showed that 11 percent of Americans age 45 and older
reported experiencing worsening confusion or memory
loss, but 76 percent had not consulted a health care
professional about it.130 Individuals concerned about
declines in memory and other cognitive abilities should
consult a health care professional.
18
women than men have Alzheimer’s disease and other
dementias. The prevailing view has been that this
discrepancy is due to the fact that women live longer
than men on average, and older age is the greatest risk
factor for Alzheimer’s.131-133 Many studies of incidence
(which indicates risk of developing disease) of
Alzheimer’s74-75,132,134-137 or any dementia73-74,133-135,138
have found no significant difference between men and
women in the proportion who develop Alzheimer’s or
other dementias at any given age. However, limited new
research suggests that risk could be higher for women,
potentially due to biological or genetic variations or
even different life experiences (for example, type and
amount of education, or occupational choices).133,139
Data from the Framingham Heart Study suggest that
because men have a higher rate of death from
cardiovascular disease than women in middle age, men
who survive beyond age 65 may have a healthier
cardiovascular risk profile and thus a lower risk for
dementia than women of the same age, though more
research is needed to support this finding.133 Another
large study showed that the APOE-e4 genotype, the
best known genetic risk factor for Alzheimer’s disease,
may have a stronger association with Alzheimer’s
disease in women than men.140-141 It is unknown why this
may be the case, but some evidence suggests an
interaction between the APOE-e4 genotype and the
sex hormone estrogen.142-143 Nonetheless, evidence
does not support the use of supplemental estrogen
after menopause to prevent Alzheimer’s,144-145 although
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
some research suggests possible benefits for women
to discrimination, may also increase risk in African-
who have had their ovaries removed.
American and Hispanic communities.161-162 Some studies
146-147
Finally,
because low education is a risk factor for dementia,
suggest that differences based on race and ethnicity do
it is possible that lower educational attainment in
not persist in rigorous analyses that account for such
women than in men born in the first half of the 20th
factors.74,117,157
73-80
century could account for a higher risk of Alzheimer’s
and other dementias in women; however, this possibility
has not been thoroughly investigated scientifically.
There is evidence that missed diagnoses of Alzheimer’s
disease and other dementias are more common among
older African-Americans and Hispanics than among
Racial and Ethnic Differences in the Prevalence of
Alzheimer’s Disease and Other Dementias
older whites.163-164 Based on data for Medicare
Although there are more non-Hispanic whites living
another dementia had been diagnosed in 6.9 percent of
with Alzheimer’s and other dementias than any other
white older adults, 9.4 percent of African-Americans and
racial or ethnic group in the United States, older
11.5 percent of Hispanics.165 Although rates of diagnosis
African-Americans and Hispanics are more likely than
were higher among African-Americans than among
older whites to have Alzheimer’s disease and other
whites, according to prevalence studies that detect all
dementias.
people who have dementia irrespective of their use of
148-152
A review of many studies by an expert
beneficiaries age 65 and older, Alzheimer’s disease or
panel concluded that older African-Americans are about
the health care system, the rates should be twice as high
twice as likely to have Alzheimer’s and other dementias
as those of whites (approximately 13.8 percent instead
as older whites,153-154 and Hispanics are about one and
of 9.4 percent).
one-half times as likely to have Alzheimer’s and other
enough evidence to estimate the prevalence of
Estimates of the Number of People
with Alzheimer’s Disease by State
Alzheimer’s disease and other dementias in other racial
Table 3 lists the estimated number of people age 65 and
and ethnic groups.
older with Alzheimer’s disease by state for 2016, the
dementias as older whites.154-156, A7 Currently, there is not
Variations in health, lifestyle and socioeconomic risk
factors across racial groups likely account for most of
the differences in risk of Alzheimer’s disease and other
dementias by race.157 Despite some evidence that the
influence of genetic risk factors on Alzheimer’s and
projected number for 2025, and the projected
percentage change in the number of people with
Alzheimer’s between 2016 and 2025.166, A8 Comparable
estimates and projections for other types of dementia are
not available.
other dementias may differ by race,158-159 genetic factors
As shown in Figure 2, between 2016 and 2025 every state
do not appear to account for the large prevalence
and region across the country is expected to experience
differences among racial groups.157,160 Instead, health
an increase of at least 14 percent in the number of people
conditions such as cardiovascular disease and diabetes,
with Alzheimer’s due to increases in the population age 65
which are associated with an increased risk for
and older. The West and Southeast are expected to
Alzheimer’s disease and other dementias, are believed to
experience the largest percentage increases in people with
account for these differences as they are more prevalent
Alzheimer’s between 2016 and 2025. These increases will
in African-American and Hispanic people.161-162 Indeed,
have a marked impact on states’ health care systems;
vascular dementia accounts for a larger proportion of
reliance on Medicaid, to which states contribute funds
dementia in African-Americans than in whites.159
(see page 52); and families and caregivers.
Socioeconomic characteristics, including lower levels of
education, higher rates of poverty and greater exposure
Prevalence
19
TABL E 3
Projections of Total Numbers of Americans Age 65 and Older with Alzheimer’s by State
Projected Number with
Percentage
Alzheimer’s (in thousands)
Change
State
2016
2025 2016-2025
Projected Number with
Percentage
Alzheimer’s (in thousands)
Change
State
2016
2025 2016-2025
Alabama
89 11023.6
Montana
19
2742.1
Alaska
6.8
Nebraska
33
4021.2
Nevada
41
6456.1
New Hampshire
23
32
39.1
New Jersey
170
210
23.5
37
53
43.2
Arizona
Arkansas
California
1161.8
130 20053.8
54
6724.1
610 84037.7
Colorado
67
9237.3
New Mexico
Connecticut
74
9123.0
New York
390
460
17.9
Delaware
17
2335.3
North Carolina
160
210
31.3
District of Columbia
9.0
9.0
North Dakota
14
16
14.3
0.0
Florida
510 72041.2
Ohio
210 25019.0
Georgia
130 19046.2
Oklahoma
62
7622.6
62
8435.5
Hawaii
26
3534.6
Oregon
Idaho
23
3343.5
Pennsylvania270 320 18.5
Illinois
220 26018.2
Rhode Island
23
27
17.4
Indiana
110 13018.2
South Carolina
84
120
42.9
17
20
17.6
Iowa
63
7315.9
South Dakota
Kansas
51
6221.6
Tennessee 110 14027.3
Kentucky
69
8624.6
Texas
Louisiana
84 11031.0
Utah
30
4240.0
Maine
26
Vermont
12
1741.7
Maryland
100 13030.0
Massachusetts120
Michigan
3534.6
150 25.0
180 22022.2
Virginia
350 49040.0
140 19035.7
Washington100 14040.0
West Virginia
37
44
18.9
Minnesota
91 12031.9
Wisconsin 110 13018.2
Mississippi
52
Wyoming
Missouri
6525.0
9.1
110 13018.2
Created from data provided to the Alzheimer’s Association by Weuve et al.166, A8
20
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
1342.9
Projected Increases Between 2016 and 2025 in Alzheimer’s Disease Prevalence by State
FIGURE 2
14.3% - 18.5%
18.6% - 24.5%
24.6% - 34.6%
34.7% - 41.5%
41.6% - 61.8%
AK
WA
MT
ME
ND
OR
VT NH
MN
ID
WI
SD
NY
WY
PA
IA
NE
NV
OH
UT
IL
WV
KS
VA
MO
KY
NC
TN
AZ
NJ
MD DE
DC
IN
CO
CA
MA
CT RI
MI
OK
NM
AR
HI
SC
MS
TX
AL
GA
LA
FL
Change from 2016 to 2025 for Washington, D.C.: 0.0%
Created from data provided to the Alzheimer’s Association by Weuve et al.166, A8
Incidence of Alzheimer’s Disease
Alzheimer’s increases dramatically with age: in 2016,
While prevalence refers to existing cases of a disease in a
there will be approximately 63,000 new cases among
population at a given time, incidence refers to new cases
people age 65 to 74, 172,000 new cases among people
of a disease that develop in a given period of time in a
age 75 to 84, and 241,000 new cases among people age
defined population — in this case, the U.S. population
85 and older (the “oldest-old”).167, A9 This translates to
age 65 or older. Incidence provides a measure of risk for
approximately two new cases per 1,000 people age
developing a disease. Approximately 476,000 people age
65 to 74, 13 new cases per 1,000 people age 75 to 84,
65 or older will develop Alzheimer’s disease in the United
and 37 new cases per 1,000 people age 85 and older. A9
States in 2016.
Because of the increasing number of people age 65 and
A9
The number of new cases of
Prevalence
21
Trends in the Prevalence and Incidence
of Alzheimer’s Disease
older in the United States, particularly the oldest-old,
the annual number of new cases of Alzheimer’s and
other dementias is projected to double by 2050.167
A growing number of studies indicate that the
• Every 66 seconds, someone in the United States
age-specific risk of Alzheimer’s and other dementias in
develops Alzheimer’s. A10
the United States and other higher-income Western
• By mid-century, someone in the United States will
countries may have declined in the past 25 years,169-176
develop the disease every 33 seconds. A10
though results are mixed. 32 These declines have largely
been attributed to increasing levels of education and
Lifetime Risk of Alzheimer’s Disease
improved control of cardiovascular risk factors.171,177
Lifetime risk is the probability that someone of a given
Such findings are promising and suggest that
age will develop a condition during his or her remaining
identifying and reducing risk factors for Alzheimer’s
life span. Data from the Framingham Study were used
and other dementias may be effective. Although these
to estimate lifetime risks of Alzheimer’s disease by age
findings indicate that a person’s risk of dementia at any
and sex.
given age may be decreasing slightly, it should be noted
168, A11
As shown in Figure 3, the study found
that the estimated lifetime risk for Alzheimer’s
that the total number of Americans with Alzheimer’s
specifically at age 65 was one in six (17 percent) for
and other dementias is expected to continue to
women and one in 11 (9 percent) for men.168
increase dramatically because of the population’s shift
to older ages (see Looking to the Future). Thus, while
FIGURE 3
Percentage
Estimated Lifetime Risk for Alzheimer’s, by Age and Sex, from the Framingham Study
Men
Women
25
20
20%
19%
17.2%
17%
15
12%
10
10%
9.1%
9%
5
0
Age
65
75
85
Created from data from Seshadri et al.168
22
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
these findings are promising, the social and economic
• In 2010, there were an estimated 454,000 new
burden of Alzheimer’s and other dementias will
cases of Alzheimer’s disease. By 2030, that number is
continue to grow.
projected to be 615,000 (a 35 percent increase), and
by 2050, 959,000 (a 110 percent increase
Looking to the Future
from 2010).167
• By 2025, the number of people age 65 and older with
The number of Americans surviving into their
80s, 90s and beyond is expected to grow dramatically due
Alzheimer’s disease is estimated to reach 7.1 million
to medical advances, as well as social and environmental
— almost a 40 percent increase from the 5.2 million
conditions.178 Additionally, a large segment of the
age 65 and older affected in 2016.33, A13
• By 2050, the number of people age 65 and older with
American population — the baby boom generation
— has begun to reach age 65 and older, when the risk
Alzheimer’s disease may nearly triple, from 5.2 million
for Alzheimer’s and other dementias is elevated. By
to a projected 13.8 million, barring the development
2030, the segment of the U.S. population age 65 and
of medical breakthroughs to prevent or cure the
older will increase substantially, and the projected
disease.33, A12 Previous estimates based on high range
74 million older Americans will make up over 20 percent
projections of population growth provided by the
of the total population (up from 14 percent in 2012).
U.S. Census suggest that this number may be as high
178
as 16 million.179, A14
As the number of older Americans grows rapidly, so too
will the numbers of new and existing cases of
Alzheimer’s disease, as shown in Figure 4.33, A12
FIGURE 4
Projected Number of People Age 65 and Older (Total and by Age Group)
in the U.S. Population with Alzheimer’s Disease, 2010 to 2050
Millions of people
with Alzheimer’s
Ages 65-74
Ages 75-84
Ages 85+
13.8
14
11.6
12
10
8.4
8
5.8
6
4.7
4
2
0
Year2010
2020
2030
2040
2050
Created from data from Hebert et al. 33, A12
Prevalence
23
Growth of the Oldest-Old Population
Longer life expectancies and aging baby boomers will
also increase the number and percentage of Americans
who will be among the oldest-old, individuals age
85 and older. Between 2012 and 2050, the oldest-old
are expected to increase from 14 percent of all people
age 65 and older in the United States to 22 percent of
all people age 65 and older.178 This will result in an
additional 12 million oldest-old people — individuals
at the highest risk for developing Alzheimer’s.178
• In 2016, about 2 million people who have Alzheimer’s
disease are age 85 or older, accounting for
37 percent of all people with Alzheimer’s.33
• When the first wave of baby boomers reaches
age 85 (in 2031), it is projected that more than
3 million people age 85 and older will
have Alzheimer’s.33
• By 2050, as many as 7 million people age 85 and
older may have Alzheimer’s disease, accounting for
half (51 percent) of all people 65 and older with
Alzheimer’s.33
24
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
MORTALIT Y AN D MORBI DIT Y
61
Among people age 70,
P E RC E N T
of those with Alzheimer’s are
expected to die before age 80
compared with 30 percent of
those without Alzheimer’s.
25
Alzheimer’s disease is officially listed as the
sixth-leading cause of death in the United
States.180 It is the fifth-leading cause of death for
those age 65 and older.180 However, it may cause
even more deaths than official sources recognize.
Alzheimer’s is also a leading cause of disability
and poor health (morbidity). Before a person
with Alzheimer’s dies, he or she lives through
years of morbidity as the disease progresses.
contributing cause of death for more Americans than is
indicated by CDC data. A recent study using data from the
Rush Memory and Aging Project and the Religious Orders
Study supports this concept: researchers estimated that
500,000 deaths among people age 75 and older could be
attributed to Alzheimer’s disease in the United States in
2010 (estimates for people age 65 to 74 were not
available), meaning that those deaths would not be
expected to occur in that year if those individuals did not
have Alzheimer’s.187
The situation has been described as a “blurred distinction
Deaths from Alzheimer’s Disease
between death with dementia and death from
It is difficult to determine how many deaths are caused by
dementia.”188 According to data from the Chicago Health
Alzheimer’s disease each year because of the way causes
of death are recorded. According to data from the
National Center for Health Statistics of the Centers for
Disease Control and Prevention (CDC), 84,767 people
died from Alzheimer’s disease in 2013.180 The CDC
considers a person to have died from Alzheimer’s if the
death certificate lists Alzheimer’s as the underlying
cause of death, defined by the World Health
Organization as “the disease or injury which initiated the
train of events leading directly to death.”181 However,
death certificates for individuals with Alzheimer’s often
list acute conditions such as pneumonia as the primary
cause of death rather than Alzheimer’s, and Alzheimer’s
and other dementias are underreported as the
underlying cause of death.
182-184
Severe dementia
frequently causes complications such as immobility,
swallowing disorders and malnutrition that can
significantly increase the risk of other serious conditions
that can cause death. One such condition is pneumonia,
and Aging Project (CHAP), an estimated 600,000 people
age 65 and older in the United States had Alzheimer’s
when they died in 2010, meaning they died with
Alzheimer’s disease.189 Of these, an estimated 400,000
were age 85 and older, and an estimated 200,000 were
age 65 to 84. Furthermore, according to Medicare data,
about one-third of all seniors who die in a given year have
been diagnosed with Alzheimer’s or another
dementia.165,190 Although some seniors who have
Alzheimer’s disease at the time of death die from causes
that are unrelated to Alzheimer’s, many of them die from
Alzheimer’s disease itself or from conditions in which
Alzheimer’s was a contributing cause, such as pneumonia.
A recent study evaluating the contribution of individual
common diseases to death using a nationally
representative sample of older adults found that dementia
was the second largest contributor to death behind heart
failure.191 Thus, for people who have Alzheimer’s when
they die, the disease is expected to significantly and
which is the most commonly identified cause of death
directly contribute to their deaths.
among elderly people with Alzheimer’s disease and
In 2016, an estimated 700,000 people in the United
other dementias.185-186 The number of people with
States age 65 and older will have Alzheimer’s disease
Alzheimer’s disease who die while experiencing these
when they die, based on CHAP data.189 The true number
other conditions may not be counted among the
of deaths caused by Alzheimer’s is likely to be somewhere
number of people who died from Alzheimer’s disease
between the official number of deaths from Alzheimer’s
according to the CDC definition, even though
(as indicated by death certificates) and the estimated
Alzheimer’s disease is likely a contributing cause of
number of people who have Alzheimer’s disease when
death. Thus, it is likely that Alzheimer’s disease is a
26
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
they die. Regardless of the cause of death, among
patterns of reporting deaths on death certificates
people age 70, 61 percent of those with Alzheimer’s
over time as well as an increase in the actual number
are expected to die before age 80 compared with
of deaths attributable to Alzheimer’s.
30 percent of people without Alzheimer’s.
192
State-by-State Deaths from
Alzheimer’s Disease
Public Health Impact of Deaths
from Alzheimer’s Disease
Table 4 provides information on the number of
As the population of the United States ages,
deaths due to Alzheimer’s by state in 2013, the most
Alzheimer’s is becoming a more common cause of
recent year for which state-by-state data are
death. Although deaths from other major causes have
available. This information was obtained from death
decreased significantly, official records indicate that
certificates and reflects the condition identified by
deaths from Alzheimer’s disease have increased
the physician as the underlying cause of death. The
significantly. Between 2000 and 2013, deaths
table also provides annual mortality rates by state to
attributed to Alzheimer’s disease increased 71 percent,
compare the risk of death due to Alzheimer’s disease
while those attributed to the number one cause
across states with varying population sizes. For the
of death (heart disease) decreased 14 percent
United States as a whole, in 2013, the mortality rate
(Figure 5).180 The increase in the number and
for Alzheimer’s disease was 27 deaths per
proportion of death certificates listing Alzheimer’s as
100,000 people.180
the underlying cause of death reflects both changes in
FIGURE 5
Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2013
Percentage
70
+71%
60
50
40
30
20
10
0
-10
-2%
-11%
-14%
-23%
-20
-30
-40
-52%
-50
Cause
of Death
Breast
Prostate
Heart
Stroke
HIV
Alzheimer’s
cancer
cancer
disease
disease
Created from data from the National Center for Health Statistics.180
Mortality and Morbidity
27
TABL E 4
State Number of Deaths and Annual Mortality Rate (per 100,000) Due to Alzheimer’s Disease by State, 2013
Number of Deaths
Alabama
Mortality
Rate
State Number of Deaths
Mortality
Rate
1,39828.9
Montana
26726.3
Alaska
729.8
Nebraska
55729.8
Arizona
2,38336.0
Nevada
44816.1
New Hampshire
351
26.5
Arkansas
91831.0
California
11,89131.0
New Jersey
1,812
20.4
Colorado
1,31625.0
New Mexico
339
16.3
Connecticut
82422.9
New York
2,556
13.0
Delaware
19220.7
North Carolina
2,872
29.2
District of Columbia
130
North Dakota
363
50.2
20.1
Florida
5,09326.0
Ohio
3,79832.8
Georgia
2,04820.5
Oklahoma
1,14529.7
Hawaii
26018.5
Oregon
1,31233.4
Idaho
34721.5
Pennsylvania
3,27125.6
Illinois
2,91922.7
Rhode Island
Indiana
2,10432.0
South Carolina
Iowa
1,25240.5
South Dakota
Kansas
74225.6
346
32.9
1,623
34.0
418
49.5
Tennessee
2,53639.0
Kentucky
1,46233.3
Texas
5,29320.0
Louisiana
1,50532.5
Utah
41214.2
26942.9
Maine
40130.2
Vermont
Maryland
91915.5
Virginia
1,64219.9
3,27747.0
Massachusetts
1,69925.4
Washington
Michigan
3,22032.5
West Virginia
Minnesota
1,42726.3
Wisconsin
1,67129.1
Mississippi
92530.9
Wyoming
12621.6
Missouri
2,02633.5
U.S. Total 590
84,767
Created from data from the National Center for Health Statistics.180, A15
28
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
31.8
26.8
TABL E 5
Age
U.S. Annual Alzheimer’s Death Rates (per 100,000) by Age
20002001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013
45-54 0.20.20.1 0.20.20.20.20.20.2 0.2 0.3 0.20.20.2
55-64 2.02.1 1.9 2.0 1.8 2.1 2.12.2 2.2 2.0 2.1 2.22.2 2.2
65-74 18.718.6 19.6 20.7 19.5 20.2 19.9 20.2 21.1 19.4 19.8 19.2 17.9 18.1
75-84 139.6147.2157.7164.1168.5177.0175.0175.8192.5 179.1184.5 183.9175.4171.6
85+
667.7 725.4 790.9 846.8 875.3 935.5 923.4 928.71,002.2 945.3
987.1
967.1 936.1 929.5
Created from data from the National Center for Health Statistics.180
Alzheimer’s Disease Death Rates
As shown in Figure 6, the rate of deaths attributed
to Alzheimer’s has risen substantially since 2000.180
Table 5 shows that the rate of death from Alzheimer’s
increases dramatically with age, especially after age
65.180 The increase in the Alzheimer’s death rate over
time has disproportionately affected the oldest-old.193
Between 2000 and 2013, the death rate from
Alzheimer’s did not increase for people age 65 to 74,
but increased 23 percent for people age 75 to 84, and
39 percent for people age 85 and older.
Duration of Illness from Diagnosis to Death
Studies indicate that people age 65 and older survive an
average of 4 to 8 years after a diagnosis of Alzheimer’s
disease, yet some live as long as 20 years with
Alzheimer’s.194-199 This reflects the slow, insidious
progression of Alzheimer’s. On average, a person with
Alzheimer’s disease will spend 40 percent of their total
number of years living with dementia in its most severe
stage.192 Much of this time will be spent in a nursing
home. Exemplifying this, nursing home admission by
age 80 is expected for 75 percent of people with
Alzheimer’s compared with only 4 percent of the
general population.192 In all, an estimated two-thirds of
those who die of dementia do so in nursing homes,
compared with 20 percent of people with cancer and
28 percent of people dying from all other conditions. 200
Burden of Alzheimer’s Disease
The long duration of illness before death contributes
significantly to the public health impact of Alzheimer’s
disease because much of that time is spent in a state of
disability and dependence. Scientists have developed
methods to measure and compare the burden of
different diseases on a population in a way that takes
into account not only the number of people with the
condition, but also both the number of years of life lost
due to that disease as well as the number of healthy
years of life lost by virtue of being in a state of disability.
These measures indicate that Alzheimer’s is a very
burdensome disease and that the burden of Alzheimer’s
has increased more dramatically in the United States
than other diseases in recent years. The primary
measure of disease burden is called disability-adjusted
life years (DALYs), which is the sum of the number of
years of life lost due to premature mortality and the
number of years lived with disability, totaled across all
those with the disease. Using this measure, Alzheimer’s
rose from the 25th most burdensome disease in the
Mortality and Morbidity
29
U.S. Annual Alzheimer’s Death Rate (per 100,000) by Year
FIGURE 6
Rate
30
27.1
25
20
15
17.6
18.9
20.5
21.9
24.2
24.3
24.8
2005
2006
2007
22.5
25.8
27.0
27.3
26.6
26.8
2012
2013
10
5
0
2000
2001
2002
2003
2004
2008
2009
2010
Created from data from the National Center for Health Statistics.180
United States in 1990 to the 12th in 2010. No other
disease or condition increased as much. 201 In terms of
years of life lost, Alzheimer’s disease rose from 32nd to
9th, the largest increase for any disease. In terms of
years lived with disability, Alzheimer’s disease went from
ranking 17th to 12th; only kidney disease equaled
Alzheimer’s in as high a jump in rank.
Taken together, the numbers in this section indicate
that not only is Alzheimer’s disease responsible for the
deaths of more and more Americans, the disease is also
contributing to more and more cases of poor health
and disability in the United States.
.
30
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
2011
1
C AREGIVI NG
15
More than
MILLION
Americans provide unpaid care
for people with Alzheimer’s
disease and other dementias.
31
Caregiving refers to attending to another
individual’s health needs. Caregiving often
includes assistance with one or more activities of
daily living (ADLs), such as bathing and dressing,
as well as multiple instrumental activities of daily
living (IADLs), such as paying bills, shopping and
transportation.202-203 More than 15 million
million Americans provide unpaid care for people
with Alzheimer’s disease and other dementias. A16
more caregivers, whereas 23 percent of people without
dementia rely on three or more unpaid caregivers. 208
Only a small percentage of older adults with dementia
do not receive help from family members or other
informal care providers (8 percent). Of these individuals,
more than 40 percent live alone, perhaps making it
more difficult to ask for and receive informal care. 208
Who Are the Caregivers?
Several sources have examined the demographic
background of family caregivers of people with
Alzheimer’s disease and other dementias in the
Unpaid Caregivers
United States.209-212, A17 About one in three caregivers
Eighty-three percent of the help provided to older
(34 percent) is age 65 or older. A17 Over two-thirds of
adults in the United States comes from family
caregivers are married, living with a partner or in a
members, friends or other unpaid caregivers. 204 In
long-term relationship.210, A17 More than two-thirds of
2015, caregivers of people with Alzheimer’s and
caregivers are non-Hispanic white,209-210, A17 while
other dementias provided an estimated 18.1 billion
10 percent are African-American, 8 percent are
hours of informal (that is, unpaid) assistance, a
Hispanic, and 5 percent are Asian. A17 Over 40 percent of
contribution to the nation valued at $221.3 billion.
dementia caregivers have a college degree or greater
This is approximately 47 percent of the net value of
education.210, A17 Forty-one percent of caregivers have
Walmart sales in 2014 ($473.1 billion)
a household income of $50,000 or less. A17 Among
205
and eight
times the total revenue of McDonald’s in 2014
primary caregivers of people with dementia (individuals
($27.4 billion). 206 The value of informal care
who indicate having the most responsibility for helping
(not including caregivers’ out-of-pocket costs)
their relatives), over half (55 percent) take care of
was nearly equal to the costs of direct medical and
parents.212 Most caregivers (66 percent) live with the
long-term care of dementia in 2010.
care recipient in the community.208 It is estimated that
207
The three primary reasons caregivers decide to
provide care and assistance to a person with
Alzheimer’s disease are (1) the desire to keep a family
member/friend at home (65 percent), (2) proximity to
the person with dementia (48 percent) and (3) the
caregiver’s perceived obligation as a spouse or partner
(38 percent).
A17
Individuals with dementia living in the
250,000 children and young adults between ages 8 and
18 provide help to someone with Alzheimer’s disease or
another dementia.213 National surveys have found that
23 percent of Alzheimer’s disease and dementia
caregivers were “sandwich generation” caregivers —
meaning that they care not only for an aging parent,
but also for children under age 18. A17
community are more likely than those without
dementia to rely on multiple unpaid caregivers;
30 percent of people with dementia rely on three or
32
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
Caregiving and Women
Caregiving Tasks
The responsibilities of caring for someone with
The care provided to people with Alzheimer’s disease
dementia often fall to women. Approximately
and other dementias is wide-ranging and in some
two-thirds of caregivers are women. 209-210, A17 More
instances all-encompassing. Table 6 summarizes some
specifically, over one-third of dementia caregivers are
of the most common types of dementia care provided.
daughters. 208 It is more common for wives to provide
informal care for a husband than vice versa. 214 On
average, female caregivers spend more time caregiving
than male caregivers. For example, daughters provide,
on average, 102 hours per month whereas sons provide
80 hours per month. 208 According to the 2014
Alzheimer’s Association Women and Alzheimer’s Poll,
more than twice as many women caregivers as men
caregivers reported spending 21 to 60 hours per week
providing care, and two and a half times as many
reported living with the person with dementia full
time. 215 Caregivers who are women may experience
slightly higher levels of burden, depression and impaired
health than men, with evidence suggesting that these
differences arise because female caregivers tend to
spend more time caregiving, take on more caregiving
tasks, and are more likely to care for someone with a
greater number of behavioral problems.
TABL E 6
Though the care provided by family members of people
with Alzheimer’s disease and other dementias is
somewhat similar to the help provided by caregivers of
people with other conditions, dementia caregivers tend
to provide more extensive assistance. Family caregivers
of people with dementia help with an average of two
ADLs and five IADLs and are more likely to monitor the
health of their care recipients than are caregivers of
people without dementia (79 percent versus
66 percent).216 Data from the 2011 National Health and
Aging Trends Study209,217 indicated that caregivers of
people with dementia are more likely than caregivers of
people without dementia to provide help with self-care
and mobility (85 percent versus 71 percent) and health or
medical care (63 percent versus 52 percent). Yet half of
caregivers of people with Alzheimer’s disease or another
dementia indicate having no experience performing
medical/nursing tasks (51 percent).216
Dementia Caregiving Tasks
Helping with instrumental activities of daily living (IADLs), such as household chores, shopping, preparing meals, providing
transportation, arranging for doctor’s appointments, managing finances and legal affairs, and answering the telephone.
Helping the person take medications correctly, either via reminders or direct administration of medications.
Helping the person adhere to treatment recommendations for dementia or other medical conditions.
Assisting with personal activities of daily living (ADLs), such as bathing, dressing, grooming and feeding and helping
the person walk, transfer from bed to chair, use the toilet and manage incontinence.
Managing behavioral symptoms of the disease such as aggressive behavior, wandering, depressive mood, agitation, anxiety,
repetitive activity and nighttime disturbances.
Finding and using support services such as support groups and adult day service programs.
Making arrangements for paid in-home, nursing home or assisted living care.
Hiring and supervising others who provide care.
Assuming additional responsibilities that are not necessarily specific tasks, such as:
• Providing overall management of getting through the day.
• Addressing family issues related to caring for a relative with Alzheimer’s disease, including communication with
other family members about care plans, decision-making and arrangements for respite for the main caregiver.
Caregiving
33
Proportion of Alzheimer’s and Dementia Caregivers Versus Caregivers of Other
Older People in the Community by Duration of Caregiving, United States, 2011
FIGURE 7A
Caregivers of people with Alzheimer’s and other dementias
Percentage
Caregivers of other older people
50
45
40
38.4%
35
30
38.5%
31.1%
25
23.2%
20
15
10
21.3%
18.5%
17.0%
11.9%
5
0
Duration
1 year or less
2-3 years
4-5 years
6+ years
Created from data from the National Health and Aging Trends Study. 209
Proportion of Alzheimer’s and Dementia Caregivers Versus Caregivers of Other Older
People in Residential Care Settings by Duration of Caregiving, United States, 2011
FIGURE 7B
Caregivers of people with Alzheimer’s and other dementias
Percentage
Caregivers of other older people
50
47.4%
45
40
35
30
27.2%
25
20
26.8%
29.4%
24.0%
19.4%
15
14.5%
10
11.3%
5
0
Duration
1 year or less
2-3 years
4-5 years
Created from data from the National Health and Aging Trends Study. 209
34
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
6+ years
Among all older adults with dementia, 77 percent
residential care facility, but other studies have found
receive assistance with ADLs or household activities in
that distress declines significantly following
contrast to only 20 percent of older adults without
admission. 221-223
dementia. 208 Over half of individuals with dementia
(53 percent) receive assistance from family members or
other informal caregivers for ADLs compared with
11 percent of older adults without dementia.
208
Among
older adults who receive help, nearly 40 percent of
people with dementia receive help with three or more
ADLs compared with 14 percent of people without
dementia.
208
In addition to assisting with ADLs, almost two-thirds
of caregivers of people with Alzheimer’s disease and
other dementias advocate for their care recipient
with government agencies and service providers
(61 percent) and manage finances (65 percent). Close to
half arrange for outside services (45 percent), and
nearly four of five communicate with health care
professionals (79 percent).216 Caregivers of people with
dementia are more likely to coordinate health care for
Duration of Caregiving
Eighty-six percent of dementia caregivers have provided
care and assistance for at least the past year, according to
the national 2014 Alzheimer’s Association Women and
Alzheimer’s Poll (which surveyed both men and women). A17
Caregivers of people with Alzheimer’s and other
dementias provide care for a longer time, on average,
than caregivers of older adults with other conditions. As
shown in Figure 7A, 38 percent of all family caregivers of
care recipients living in the community had provided care
for 6 or more years. As shown in Figure 7B, this increases
to 47 percent for family caregivers of people with
dementia living in residential care settings, compared
with 29 percent for family caregivers of older adults
without dementia who live in residential care settings.209
the care recipient than caregivers of people without
Hours of Unpaid Care and
Economic Value of Caregiving
dementia (86 percent versus 72 percent). 209 Caring for
In 2015, the 15.9 million family and other unpaid
a person with dementia also means managing
caregivers of people with Alzheimer’s disease and other
symptoms that caregivers of people with other diseases
dementias provided an estimated 18.1 billion hours of
may not face, such as neuropsychiatric symptoms (for
unpaid care. This number represents an average of
example, anxiety, apathy and lack of inhibition) and
21.9 hours of care per caregiver per week, or
severe behavioral problems. Family caregivers often
1,139 hours of care per caregiver per year. A18 With this
lack the information or resources necessary to manage
care valued at $12.25 per hour, A19 the estimated
the increasingly complex medication regimens for
economic value of care provided by family and other
people with dementia. 218
unpaid caregivers of people with dementia was
When a person with Alzheimer’s or another dementia
moves to an assisted living residence or nursing home,
the help provided by his or her family caregiver usually
changes from the comprehensive care summarized in
Table 6 (see page 33) to providing emotional support,
interacting with facility staff and advocating for
appropriate care. However, some family caregivers
continue to help with bathing, dressing and other
ADLs. 219-221 Admitting a relative to a residential care
facility has mixed effects on the emotional and
psychological well-being of family caregivers. Some
studies suggest that distress remains unchanged or
even increases after a relative is admitted to a
$221.3 billion in 2015. Table 7 (see pages 38-39) shows
the total hours of unpaid care as well as the value of care
provided by family and other unpaid caregivers for the
United States and each state. Unpaid caregivers of
people with Alzheimer’s and other dementias provided
care valued at more than $4 billion in each of 21 states.
Unpaid caregivers in each of the four most populous
states — California, Florida, New York and Texas —
provided care valued at more than $14 billion. Additional
research is needed to estimate the future value of family
care for people with Alzheimer’s disease as the U.S.
population continues to age. A longitudinal study of the
monetary value of family caregiving for individuals with
Caregiving
35
dementia found that the overall value of daily family
Caregiver Emotional Well-Being
care increased 18 percent with each additional year of
Although caregivers report positive feelings about
providing care, and that value of daily care increased as
caregiving, such as family togetherness and the
the care recipient’s cognitive abilities declined.
satisfaction of helping others,232, A17 they also report
224
Caregivers of people with dementia report providing
24 hours more care per month on average (92 hours
high levels of stress when providing care:
•Compared with caregivers of people without dementia,
versus 65 hours) than caregivers of people without
twice as many caregivers of those with dementia
dementia, with over half providing more than
indicate substantial financial, emotional and physical
21 hours of care per week.
difficulties.209
209,216
Considering all sources
of unpaid care (for example, help from multiple family
•Fifty-nine percent of family caregivers of people with
members) among people who receive such care,
Alzheimer’s and other dementias rated the emotional
individuals with dementia receive an average of
stress of caregiving as high or very high (Figure 8, see
171 hours of care per month, which is over 100 hours
page 40). A17
more care per month than those without dementia
(66 hours per month, on average).
204
Impact of Alzheimer’s Disease Caregiving
•Approximately 40 percent of family caregivers of
people with dementia suffer from depression,
compared with 5 to 17 percent of non-caregivers of
similar ages.230,233-236 Rates of depression increase with
Caring for a person with Alzheimer’s or another
the severity of cognitive impairment of the person
dementia poses special challenges. For example, people
with dementia.237-238
in the middle to later stages of Alzheimer’s disease
•One in five (22 percent) caregivers of people with
experience losses in judgment, orientation and the
Alzheimer’s disease or another dementia has difficulty
ability to understand and communicate effectively.
with medical/nursing tasks, compared with
Family caregivers must often help people with
11 percent of caregivers of individuals without
Alzheimer’s manage these issues. The personality and
dementia. 216
behavior of a person with Alzheimer’s are affected as
•According to the 2014 Alzheimer’s Association poll,
well, and these changes are often among the most
respondents often believed they had no choice in
challenging for family caregivers.225 Individuals with
taking on the role of caregiver. A17
Alzheimer’s also require increasing levels of supervision
•The 2014 Alzheimer’s Association poll also found that
and personal care as the disease progresses. As
women with children under age 18 felt that caregiving
symptoms worsen, the care required of family members
for someone with Alzheimer’s disease was more
can result in increased emotional stress and depression;
challenging than caring for children (53 percent). A17
new or exacerbated health problems; and depleted
•The demands of caregiving may intensify as people
income and finances due in part to disruptions in
with dementia approach the end of life.239 In the year
employment and paying for health care or other services
before the person’s death, 59 percent of caregivers
for themselves and their care recipients
felt they were “on duty” 24 hours a day, and many felt
(see Special Report, page 57).226-231, A17 The intimacy,
that caregiving during this time was extremely
shared experiences and memories that are often part of
stressful.240 One study of end-of-life care found that
the relationship between a caregiver and care recipient
72 percent of family caregivers experienced relief
may also be threatened due to the memory loss,
when the person with Alzheimer’s disease or another
functional impairment and psychiatric/behavioral
dementia died.240
disturbances that can accompany the progression of
Alzheimer’s disease.
36
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
•Many caregivers of people with Alzheimer’s disease
compared with 2 percent of other caregivers.210
and other dementias provide help alone. Forty-one
According to 1998-2010 biannual data from the Health
percent of dementia caregivers in the 2014
and Retirement Survey, dementia caregivers were much
Alzheimer’s Association poll reported that no one else
more likely (41 percent increased odds) than other
provided unpaid assistance. A17
caregivers to become increasingly frail from the period
•Sandwich generation caregivers indicate lower quality
prior to the death of a spouse receiving care to the time
of life and diminished health and health behaviors (for
of the spouse’s death, accounting for differences in age
example, less likely to choose healthful foods and less
and additional factors.248 Other studies, however,
likely to exercise) compared with non-sandwich
suggest that caregiving tasks have the positive effect of
generation caregivers or non-caregivers.
keeping older caregivers more physically active than
241-243
non-caregivers.249
Caregiver Physical Health
For some caregivers, the demands of caregiving may
Physiological Changes
cause declines in their own health. Evidence suggests
The chronic stress of caregiving is associated with
that the stress of dementia care provision increases
physiological changes that could increase the risk of
caregivers’ susceptibility to disease and health
developing chronic conditions. For example, several
complications.
studies found that under certain circumstances some
244
As shown in Figure 8 (see page 40),
38 percent of Alzheimer’s and dementia caregivers
Alzheimer’s caregivers were more likely to have elevated
indicate that the physical impact of caregiving was high to
biomarkers of cardiovascular disease risk and impaired
very high.
kidney function risk than those who were
A17
Sleep disturbances, which can occur
frequently when caring for a relative with Alzheimer’s
not caregivers.250-255
disease or another dementia, have also been shown to
Caregivers of a spouse with Alzheimer’s or
negatively influence family caregivers’ health.245-246
Caregivers of people with Alzheimer’s disease and other
dementias were also more likely to indicate a high degree
of physical strain related to care provision than other
caregivers (28 percent versus 17 percent, respectively).
216
another dementia are more likely than married
non-caregivers to have physiological changes that may
reflect declining physical health, including high levels of
stress hormones,256 reduced immune function,226,257
slow wound healing,258 increased incidence of
General Health
hypertension,259 coronary heart disease260 and impaired
Seventy-four percent of caregivers of people with
function of the endothelium (the inner lining of blood
Alzheimer’s disease and other dementias reported that
vessels). Some of these changes may be associated with
they were “somewhat concerned” to “very concerned”
an increased risk of cardiovascular disease.261
about maintaining their own health since becoming a
Health Care
caregiver. A17 Dementia caregivers were more likely than
non-caregivers to report that their health was fair or
poor.228 Dementia caregivers were also more likely than
caregivers of other older people to say that caregiving
made their health worse.247 According to the 2009 and
2010 Behavioral Risk Factor Surveillance System
(BRFSS) surveys, 7 percent of dementia caregivers
indicate that the greatest difficulty of caregiving is that it
creates or aggravates their own health problems
The physical and emotional impact of dementia
caregiving is estimated to have resulted in $10.2 billion
in health care costs in the United States in 2015. A20
Table 7 (see pages 38-39) shows the estimated higher
health care costs for Alzheimer’s and dementia
caregivers in each state. In separate studies,
hospitalization and emergency department visits were
more likely for dementia caregivers who helped care
Caregiving
37
TABL E 7
Number of Alzheimer’s and Dementia (AD/D) Caregivers, Hours of Unpaid Care, Economic
Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2015*
AD/D Caregivers
State
(in thousands)
Alabama
Alaska
302
Value of Unpaid Care
(in millions of dollars)
Higher Health Care
Costs of Caregivers
(in millions of dollars) †
344$4,209 $177
33
38$463 $28
Arizona
319
364$4,456 $163
Arkansas
175
199$2,440 $101
California
1,592
1,814$22,215
$936
Colorado
239
272$3,336 $135
Connecticut
177
202$2,471 $144
Delaware
53
60$740 $42
District of Columbia
28
32
Florida
Georgia
1,080
$388
1,230$15,069
513
$27
$726
584$7,160 $263
Hawaii
66
75$915 $42
Idaho
79
90$1,108
Illinois
590
671$8,224 $375
Indiana
334
381$4,662 $209
Iowa
135
153$1,876
$88
Kansas
150
171$2,099
$96
Kentucky
270
307$3,764 $166
Louisiana
231
263$3,224 $147
Maine
38
Hours of Unpaid Care
(in millions)
68
$42
78$953 $55
Maryland
291
331$4,055 $205
Massachusetts
332
378$4,629 $289
Michigan
510
580$7,108 $317
Minnesota
249
284$3,478 $174
Mississippi
206
234$2,868 $126
Missouri
314
357$4,374 $205
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
TABL E 7 (cont .)
Number of Alzheimer’s and Dementia (AD/D) Caregivers, Hours of Unpaid Care, Economic
Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2015*
AD/D Caregivers
State
(in thousands)
Hours of Unpaid Care (in millions)
Value of Unpaid Care
(in millions of dollars)
Higher Health Care
Costs of Caregivers
(in millions of dollars) †
Montana
49
55$679 $30
Nebraska
81
92$1,133
$54
143
162$1,990
$77
Nevada
New Hampshire
66
75
$917
$48
New Jersey
449
511
$6,260
$320
New Mexico
106
121
$1,480
$66
1,021
1,163
$14,245
$800
North Carolina
454
516
$6,327
$275
North Dakota
30
35
$425
$22
New York
Ohio
596
678$8,310 $396
Oklahoma
222
252$3,092 $136
Oregon
178
202$2,480 $110
Pennsylvania
673
766$9,390 $488
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
53
60
$739
$41
300
341
$4,181
$177
37
43
$521
$25
426
1,359
485$5,941 $255
1,547$18,957
145
30
165$2,025
$756
$68
34$417 $21
Virginia
455
519$6,354 $268
Washington
330
375$4,597 $210
West Virginia
108
123
Wisconsin
192
219$2,679 $131
Wyoming
U.S. Total
28
15,864
$1,503
$77
32$388 $18
18,066
$221,312
$10,151
*State totals may not add up to the U.S. total due to rounding.
†
Higher health care costs are the dollar amount difference between the weighted per capita personal health care spending of caregivers and
non-caregivers in each state. A20
Created from data from the 2009 BRFSS, U.S. Census Bureau, Centers for Medicare and Medicaid Services, National Alliance for Caregiving,
AARP and U.S. Department of Labor. A16, A18, A19, A20
Caregiving
39
recipients who were depressed, had low functional
status or had behavioral disturbances.262-263 Increased
Proportion of Alzheimer’s and
Dementia Caregivers Who Report
High or Very High Emotional and
Physical Stress Due to Caregiving
FIGURE 8
depressive symptoms among caregivers over time are
also linked to more frequent doctor visits, a higher
number of outpatient tests and procedures, and greater
use of over-the-counter and prescription medications.263
Percentage
Mortality
80
The health of a person with dementia may also affect
60
the caregiver’s risk of dying, although studies have
reported mixed findings on this issue. In one study,
40
caregivers of spouses who were hospitalized and had
20
dementia in their medical records were more likely to
die in the following year than caregivers whose spouses
were hospitalized but did not have dementia, even after
accounting for the age of caregivers.
264
Studies of
other dementias have found that caregivers who
High to very high
Not high to somewhat high
62%
59%
41%
38%
0
Stress
Emotional stress of
caregiving
Physical stress of
caregiving
Created from data from the Alzheimer’s Association.A17
perceive higher strain due to care responsibilities are at
significantly higher risk for death than caregivers
who perceive little or no strain. 265
caregivers manage dementia-related symptoms,
Caregiver Employment
improving social support for caregivers and providing
Among people who were employed at any time since
caregivers with respite from caregiving duties.
they became caregivers of someone with Alzheimer’s
or another dementia, 9 percent ultimately quit their jobs
to continue providing care. Fifty-four percent had to go
in late or leave early, and 15 percent had to take a leave
of absence. Other work-related challenges for dementia
caregivers who had been employed at any time since
they began caregiving are summarized in Figure 9. A18
According to a recent publication that reviewed seven
meta-analyses and 17 systematic reviews of
randomized controlled trials, the following
characteristics distinguish interventions that are
effective: family caregivers are actively involved in the
intervention in contrast to passively receiving
information; the intervention is tailored and flexible to
Interventions Designed to Assist Caregivers
meet the changing needs of family caregivers during
For more than 30 years, strategies to support family
the course of a relative’s dementia; and the intervention
caregivers of people with Alzheimer’s disease have been
developed and evaluated. The types and focus of these
strategies (often called “interventions”) are summarized
in Table 8 (see page 42). 230-231
In general, interventions aim to improve the health and
well-being of dementia caregivers by relieving the
negative aspects of caregiving. Some also aim to delay
nursing home admission of the person with dementia.
Specific approaches used in various interventions
include providing education to caregivers, helping
40
meets the needs not only of caregivers, but of care
recipients as well. 266 A 2012 report identified 44
interventions that have been shown by randomized
controlled trials conducted in the United States to have
benefits for individuals with Alzheimer’s disease and
other dementias as well as their family caregivers, and
more evaluations are emerging each year. 267-268
Interventions for dementia caregivers that have
demonstrated efficacy in scientific evaluations have
been gradually implemented in the community. 269-278
These implementation efforts are generally successful
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
at improving how caregiver services are delivered, and
they have the potential to reach a large number of
families while also helping caregivers cope with their
responsibilities. Similar efforts have attempted to
broaden the reach and accessibility of interventions for
dementia caregivers through the use of technologies
(for instance, video-phone delivery and online training)
and have shown some success. 279-280 However, more
work is needed to ensure that interventions for
Direct-care workers, such as nurse aides, home health
aides and personal and home care aides, provide most of
the paid long-term care to older adults living at home or
in residential settings. In nursing homes, nursing
assistants make up the majority of staff who work with
help with bathing, dressing, housekeeping, food
those who need them. Because caregivers and the
settings in which they provide care are diverse, more
studies are required to define which interventions are
most effective for specific situations. 281-283 Improved
tools to “personalize” services for caregivers to
preparation and other activities. Most nursing assistants
are women, and they come from increasingly diverse
ethnic, racial and international backgrounds.
Direct-care workers have difficult jobs, and they may not
receive the training necessary to provide dementia
maximize their benefits is an emerging area of
research.
Direct-Care Workers for People with Alzheimer’s Disease
and Other Dementias
cognitively impaired residents. 291-293 Nursing assistants
dementia caregivers are available and accessible to
284-285
Paid Caregivers
More studies are also needed to explore
the effectiveness of interventions in different racial,
ethnic and socioeconomic groups and in different
care.292,294 One review found that direct-care workers
received, on average, 75 hours of training and that this
training included little focus on issues specific or pertinent
to dementia care.292 Turnover rates are high among
geographic settings. 280,286-290
direct-care workers, and recruitment and retention are
persistent challenges.295 Inadequate education and
FIGURE 9
Work-Related Changes Among Caregivers of People with Alzheimer’s Disease and
Other Dementias Who Had Been Employed at Any Time Since They Began Caregiving
Percentage
60
54%
40
20
15%
13%
13%
9%
8%
8%
8%
7%
Saw work
performance suffer
to point of possible
dismissal
Chose early
retirement
Had to turn
down a
promotion
0
Effect
Had to go in
late/leave early/take
time off
Had to take a
leave of absence
Had to go from
working full- to
part-time
Had to take a less
demanding job
Had to give up
working entirely
Lost job
benefits
Created from data from the Alzheimer’s Association.A18
Caregiving
41
TABL E 8
Type and Focus of Caregiver Interventions
Type of Intervention
Description
Case management
Provides assessment, information, planning, referral, care coordination and/or advocacy
for family caregivers.
Psychoeducational
Includes a structured program that provides information about the disease, resources
and services, and about how to expand skills to effectively respond to symptoms of the
disease (that is, cognitive impairment, behavioral symptoms and care-related needs).
Includes lectures, discussions and written materials and is led by professionals with
specialized training.
Counseling
Aims to resolve pre-existing personal problems that complicate caregiving to reduce
conflicts between caregivers and care recipients and/or improve family functioning.
Support groups
Less structured than psychoeducational or therapeutic interventions, support groups
provide caregivers the opportunity to share personal feelings and concerns to overcome
feelings of social isolation.
Respite
Provides planned, temporary relief for the caregiver through the provision of substitute
care; examples include adult day services and in-home or institutional respite for a
certain number of weekly hours.
Psychotherapeutic
approaches
Involve the establishment of a therapeutic relationship between the caregiver and a
professional therapist (for example, cognitive-behavioral therapy for caregivers to focus
on identifying and modifying beliefs related to emotional distress, developing new
behaviors to deal with caregiving demands, and fostering activities that can promote
caregiver well-being).
Multicomponent
approaches
Are characterized by intensive support strategies that combine multiple forms of
interventions, such as education, support and respite into a single, long-term service
(often provided for 12 months or more).
Created from data from Pinquart et al. and Sörensen et al. 230-231
42
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
challenging work environments have also contributed to
caregivers, help people with dementia manage care
higher turnover rates among nursing staff across care
transitions (for example, a change in care provider or
environments.296 Reviews have shown that staff training
site of care), and ensure the person with dementia has
programs to improve the quality of dementia care in
access to appropriate community-based services. Other
nursing homes have modest benefits.294,297
models include addressing the needs of family
Shortage of Geriatric Health Care Professionals
in the United States
caregivers simultaneously with comprehensive disease
Professionals who may receive special training in caring
quality of life of both family caregivers and people with
for older adults include physicians, nurse practitioners,
registered nurses, social workers, pharmacists, physician
assistants and case workers.
295
It is estimated that the
United States has approximately half the number of
certified geriatricians that it currently needs.
298
There
are currently 7,428 certified geriatricians and
1,629 geriatric psychiatrists in the United States, or
one geriatrician and one geriatric psychiatrist for every
management of the care recipient to improve the
dementia in the community.303 Several evaluations have
suggested that such approaches have considerable
potential for improving outcomes for people with
dementia and their family caregivers (for example,
delayed nursing home admission and reductions in
caregiver distress).304-308 Current research is attempting
to determine the feasibility of these models beyond the
specialty settings in which they currently operate.309-310
2,526 and 11,526 Americans 75 years of age and over,
respectively. 299 The American Geriatrics Society
estimates that due to the increase in older Americans
and the stagnation of the number of new geriatric
professionals trained in the past decade, these ratios will
drop to one geriatrician and one geriatric psychiatrist
for every 4,484 and 20,448 older Americans by
2030,299 respectively. According to the Institute of
Medicine, less than 1 percent of registered nurses,
physician assistants and pharmacists identify themselves
as specializing in geriatrics. 295 Similarly, although
73 percent of social workers serve clients age
55 and older, only 4 percent have formal certification
in geriatric social work. 295 Further affecting the number
of paid caregivers is the overall aging of the long-term
care workforce. 296
Recognizing that the complex care challenges of people
with dementia require interprofessional collaboration
and education, ongoing efforts have attempted to
integrate innovative care management practices with
traditional primary care for people with dementia.300-302
One example involves a skilled professional who serves
as the care “manager” of the person with dementia. The
care manager collaborates with primary care physicians
and nurse practitioners to develop personalized care
plans. These plans can provide support to family
Caregiving
43
USE AN D COST S OF H E ALTH C ARE ,
LONG-TE RM C ARE AN D HOSPICE
Total payments for health
care, long-term care and
hospice are estimated to be
236
$
BILLION
in 2016 for people with
Alzheimer’s disease and
other dementias.
44
The costs of health care, long-term care and
hospice for individuals with Alzheimer’s disease
and other dementias are substantial, and
Alzheimer’s disease is one of the costliest
chronic diseases to society.207
FIGURE 10
Aggregate Cost of Care by Payment
Source for Americans Age 65 and Older
with Alzheimer’s Disease and Other
Dementias, 2016*
Total cost: $236 Billion (B)
•
•
•
•
Total payments in 2016 (in 2016 dollars) for all
individuals with Alzheimer’s disease and other
dementias are estimated at $236 billion (Figure 10).
Medicare and Medicaid are expected to cover
$160 billion, or 68 percent, of the total health care and
long-term care payments for people with Alzheimer’s
disease and other dementias. Out-of-pocket spending
is expected to be $46 billion, or 19 percent of
Medicare
$117 B, 50%
Medicaid
$43 B, 18%
Out of pocket
$46 B, 19%
Other
$30 B, 13%
total payments. A21
Total Cost of Health Care,
Long-Term Care and Hospice
Table 9 reports the average annual per-person
*Data are in 2016 dollars.
Created from the Lewin Model. A21 “Other” payment sources include
private insurance, health maintenance organizations, other managed care
organizations and uncompensated care. Totals for payment sources may not
add to total cost due to rounding.
payments for health care and long-term care services
for Medicare beneficiaries age 65 and older with and
without Alzheimer’s disease and other dementias.
Medicaid program. Average Medicaid payments per
Unless otherwise indicated, all costs in this section are
person for Medicare beneficiaries with Alzheimer’s
reported in 2015 dollars. A22 Total per-person health
disease and other dementias ($11,338) were 19 times as
care and long-term care payments in 2015 from all
great as average Medicaid payments for Medicare
sources for Medicare beneficiaries with Alzheimer’s
beneficiaries without Alzheimer’s disease and other
and other dementias were three times as great as
dementias ($590) (Table 9).190
payments for other Medicare beneficiaries in the
same age group ($49,126 per person for those with
dementia compared with $15,550 per person for
those without dementia).190, A23
Despite these and other sources of financial assistance,
individuals with Alzheimer’s disease and other dementias
still incur high out-of-pocket costs. These costs are for
Medicare and other health insurance premiums and for
Twenty-nine percent of older individuals with
deductibles, copayments and services not covered by
Alzheimer’s disease and other dementias who have
Medicare, Medicaid or additional sources of support.
Medicare also have Medicaid coverage, compared with
Medicare beneficiaries age 65 and older with
11 percent of individuals without dementia.190 Medicaid
Alzheimer’s and other dementias paid $10,495 out of
pays for nursing home and other long-term care
pocket, on average, for health care and long-term care
services for some people with very low income and low
services not covered by other sources (Table 9).190
assets, and the high use of these services by people
Average per-person out-of-pocket payments were
with dementia translates into high costs for the
highest ($20,207 per person) for individuals living in
Use and Costs of Health Care, Long-Term Care and Hospice
45
TABL E 9
Average Annual Per-Person Payments for Health Care and Long-Term Care Services,
Medicare Beneficiaries Age 65 and Older, with and without Alzheimer’s Disease and
Other Dementias and by Place of Residence, in 2015 Dollars
Beneficiaries with Alzheimer’s Disease
and Other Dementias by Place of Residence
Payment
Source
Overall
Community-Dwelling Medicare
Medicaid
Uncompensated
Beneficiaries
without Alzheimer’s
Residential Facility
$22,206$19,776
Disease and
Other Dementias
$25,600
$8,427
11,33824926,837
306439
590
120
254
345
HMO
1,1141,729
Private insurance
2,534
2,784
2,183
1,704
Other payer
1,015
183
2,176
161
Out of pocket
10,495
3,548
20,207
2,559
Total*
49,12628,911
77,381
1,625
15,550
*Payments from sources do not equal total payments exactly due to the effect of population weighting. Payments for all beneficiaries
with Alzheimer’s disease and other dementias include payments for community-dwelling and facility-dwelling beneficiaries.
Created from unpublished data from the Medicare Current Beneficiary Survey for 2008.190
FIGURE 11
Reasons for Hospitalization of Individuals with Alzheimer’s Disease:
Percentage of Hospitalized Individuals by Admitting Diagnosis*
Percentage
30
25
26%
20
15
17%
10
9%
5
6%
5%
0
Reasons
for
Hospitalization
Syncope, fall
and trauma
Ischemic heart
disease
Gastrointestinal
Pneumonia
disease
*All hospitalizations for individuals with a clinical diagnosis of probable or possible Alzheimer’s disease
were used to calculate percentages. The remaining 37 percent of hospitalizations were due to other reasons.
Created from data from Rudolph et al. 314
46
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
Delirium, mental
status change
nursing homes and assisted living facilities and were
chronic kidney disease, chronic obstructive pulmonary
almost six times as great as the average per-person
disease (COPD), stroke or cancer who also have
payments for individuals with Alzheimer’s disease and
Alzheimer’s and other dementias have higher use and
other dementias living in the community.
costs of health care services than people with these
190
Recently, researchers evaluated the additional or
“incremental” health care and caregiving costs of
dementia (that is, the costs specifically attributed to
dementia when comparing people with and without
dementia who have the same coexisting medical
conditions and demographic characteristics). 207,311
One group of researchers found that the incremental
health care and nursing home costs for those with
dementia was $28,501 per year in 2010 dollars ($32,781
in 2015 dollars).
207, A22, A24
Another group of researchers
found that the incremental lifetime cost of Alzheimer’s
disease was substantially higher for women compared
with men, due to a greater risk of developing Alzheimer’s
disease. Additionally, because women are more likely to
be widowed and living in poverty, the incremental
Medicaid costs associated with Alzheimer’s disease were
70 percent higher for women compared with men.312
Other researchers compared end-of-life costs for
individuals with and without dementia and found that
the total cost in the last 5 years of life was $287,038 in
2010 dollars for people with dementia and $183,001 for
people with other conditions ($330,143 and $210,483,
respectively, in 2015 dollars), a difference of
57 percent.313 Additionally, out-of-pocket costs
represented a substantially larger proportion of total
wealth for those with dementia than for people with
other conditions (32 percent versus 11 percent).
Use and Costs of Health Care Services
People with Alzheimer’s disease and other dementias
have twice as many hospital stays per year as other older
people.165 Moreover, the use of health care services for
people with other serious medical conditions is strongly
affected by the presence or absence of dementia. In
particular, people with coronary artery disease, diabetes,
medical conditions but no coexisting dementia.
Use of Health Care Services
Older people with Alzheimer’s disease and other
dementias have more hospital stays, skilled nursing
facility stays and home health care visits than other
older people.
•Hospital. There are 538 hospital stays per 1,000
Medicare beneficiaries age 65 and older with
Alzheimer’s disease and other dementias compared
with 266 hospital stays per 1,000 Medicare
beneficiaries age 65 and older without these
conditions.165 The most common reasons for
hospitalization of people with Alzheimer’s disease are
syncope (fainting), fall and trauma (26 percent);
ischemic heart disease (17 percent); and
gastrointestinal disease (9 percent) (Figure 11).314
•Skilled nursing facility. Skilled nursing facilities provide
direct medical care that is performed or supervised by
registered nurses, such as giving intravenous fluids,
changing dressings and administering tube feedings.315
There are 283 skilled nursing facility stays per 1,000
beneficiaries with Alzheimer’s and other dementias
compared with 73 stays per 1,000 beneficiaries for
people without these conditions.165
•Home health care. Twenty-five percent of Medicare
beneficiaries age 65 and older with Alzheimer’s disease
and other dementias have at least one home health
care visit during the year, compared with 10 percent of
Medicare beneficiaries age 65 and older without
Alzheimer’s and other dementias.165
Differences in health care use between individuals with
and without dementia are most prominent for those
residing in the community. Based on data from the Health
and Retirement Study, community-residing individuals
Use and Costs of Health Care, Long-Term Care and Hospice
47
with dementia were more likely to have a potentially
preventable hospitalization, an emergency department
TABL E 10
visit that was potentially avoidable, and/or an emergency
department visit that resulted in a hospitalization.316 For
individuals residing in a nursing home, there were no
differences in the likelihood of being hospitalized or
having an emergency department visit.
Preventable hospitalizations are one common measure
of health care quality. Preventable hospitalizations are
Average Annual Per-Person Payments
for Health Care Services Provided to
Medicare Beneficiaries Age 65 and
Older with and without Alzheimer’s
Disease and Other Dementias, in
2015 Dollars
BeneficiariesBeneficiaries
with Alzheimer’s
without Alzheimer’s
Disease and
Disease and
Service
Other Dementias
Other Dementias
hospitalizations for conditions that could have been
Inpatient hospital
$11,834
$4,758
avoided with better access to or quality of preventive
Medical provider*
6,440
4,269
Skilled nursing facility
4,334
504
20,114
894
and primary care. Based on data from the 2006 to
2008 Health and Retirement Study and Medicare,
preventable hospitalizations represented 25 percent of
the total hospitalizations for individuals with Alzheimer’s
disease and other dementias.317 The proportion was
substantially higher, however, for African-Americans,
Hispanics and individuals with low incomes. Hispanic
older adults had the highest proportion of preventable
hospitalizations (34 percent). Based on data from the
1998 to 2008 Health and Retirement Study and
Medicare, after controlling for demographic
Nursing home
Hospice 1,976193
Home health
1,583
511
Prescription medications** 3,037
3,095
*“Medical provider” includes physician, other medical provider and laboratory
services, and medical equipment and supplies.
**Information on payments for prescription drugs is only available for people who
were living in the community; that is, not in a nursing home or assisted
living facility.
Created from unpublished data from the Medicare Current Beneficiary Survey
for 2008.190
characteristics, clinical characteristics and health risk
factors, individuals with dementia had a 1.33 times
greater risk and individuals with depression and
TABL E 11
dementia had a 1.66 times greater risk of having a
preventable hospitalization than those without
dementia, cognitive impairment without dementia or
depression.318 Healthy People 2020, the U.S.
Department of Health and Human Services’ initiative to
achieve 10-year goals for health promotion and disease
Specific Coexisting Medical Conditions
Among Medicare Beneficiaries Age 65
and Older with Alzheimer’s Disease and
Other Dementias, 2013
Coexisting Condition
Percentage of Beneficiaries with
Alzheimer’s Disease and Other
Dementias Who Also Had a
Coexisting Medical Condition
prevention, has set a target to reduce preventable
Coronary artery disease
hospitalizations for people with Alzheimer’s disease and
Diabetes37
other dementias by 10 percent by 2020.317
Chronic kidney disease
Costs of Health Care Services
With the exception of prescription medications, average
per-person payments for health care services (hospital,
physician and other medical provider, nursing home,
skilled nursing facility, hospice and home health care)
were higher for Medicare beneficiaries with Alzheimer’s
29
Congestive heart failure 28
Chronic obstructive pulmonary disease 25
Stroke22
Cancer
Created from unpublished data from the National 5% Sample Medicare
Fee-for-Service Beneficiaries for 2013.165
disease and other dementias than for other Medicare
48
38
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
13
beneficiaries in the same age group (Table 10).190 The
Individuals newly diagnosed with Alzheimer’s disease
fact that only payments for prescription drugs were
have higher health care use and costs in the year prior
lower for those with Alzheimer’s and other dementias
to diagnosis and in the 2 years after diagnosis than those
underscores the lack of effective pharmacologic
who do not receive this diagnosis, according to a study
treatments available to those with dementia.
of Medicare Advantage enrollees (that is, Medicare
beneficiaries enrolled in a private Medicare health
Use and Costs of Health Care Services Across the
Spectrum of Cognitive Impairment
insurance plan).320 Enrollees with a new diagnosis of
Alzheimer’s disease had $2,331 in 2011 dollars ($2,602
Health care costs increase with the presence of
in 2015 dollars) more in health care costs (medical and
dementia. In a population-based study of adults ages
70 to 89 in Olmsted County, Minnesota, annual health
care costs were significantly higher for individuals with
newly diagnosed dementia and existing dementia than
for those with normal cognition, and annual health care
costs were significantly higher for individuals with
prescriptions) in the year prior to diagnosis, $9,333
($10,418 in 2015 dollars) more in costs in the year
following diagnosis, and $5,761 ($6,430 in 2015 dollars)
more in costs in the second year following diagnosis. In
another study of pre-diagnosis health care costs,
Medicaid enrollees with Alzheimer’s disease had $5,549
existing dementia than for those with mild cognitive
impairment.319 Annual health care costs for individuals
with mild cognitive impairment were not significantly
in 2010 dollars ($6,382 in 2015 dollars) more in health
care costs in the year prior to diagnosis, with $3,321
($3,820 in 2015 dollars) due to additional outpatient
different, however, from costs for individuals with
medical care and $1,442 ($1,681 in 2015 dollars) in
normal cognition.
additional home care and adult day care services.321
Hospital Stays per 1,000 Beneficiaries Age 65 and Older with Specified Coexisting
Medical Conditions, with and without Alzheimer’s Disease and Other Dementias, 2014
FIGURE 12
Hospital stays
With Alzheimer’s disease and other dementias
Without Alzheimer’s disease and other dementias
1,000
800
600
804
753
791
772
590
400
727
716
576
682
678
550
475
392
386
200
0
Condition
CongestiveChronic
heart failure
obstructive
pulmonary disease
Chronic Coronary Stroke Diabetes
kidney
artery disease
disease
Cancer
Created from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014.165
Use and Costs of Health Care, Long-Term Care and Hospice
49
TABL E 12
Average Annual Per-Person Payments by Type of Service and Coexisting Medical Condition
for Medicare Beneficiaries Age 65 and Older, with and without Alzheimer’s Disease and
Other Dementias, 2014, in 2015 Dollars*
Medical Condition
by
Alzheimer’s
Selected
Medical Condition
Disease/Dementia
by Alzheimer’s Disease/
(AD/D) Status
Dementia
(AD/D) Status
Average Per-Person Medicare Payment
Total
Skilled Medicare Hospital Physician
Nursing
HomeHospice
Payments
Care Care
Facility Care Health Care
Care
Coronary artery disease
With AD/D
Without AD/D
$25,339
15,815
$7,498
$2,137
5,400 1,521
4,249
1,365
$2,262$2,775
938361
Diabetes
With AD/D
24,529
7,134
Without AD/D
13,542
4,469 1,341
2,093
4,109
1,187
2,1882,499
814246
Congestive heart failure
With AD/D
27,804
8,427
Without AD/D
23,589
8,555 2,016
2,244
4,644
2,3693,322
2,514 1,682779
Chronic kidney disease
With AD/D
27,058
8,075
Without AD/D
19,400
6,647 1,728
2,191
4,520
2,2382,968
1,824 1,159457
Chronic obstructive pulmonary disease
With AD/D
26,860
8,098
Without AD/D
18,323
6,485 1,676
2,219
4,479
2,3153,078
1,694
1,151581
Stroke
With AD/D
25,711
7,401
Without AD/D
18,523
6,020 1,704
2,116
4,421
2,1753,088
2,222 1,404583
Cancer
With AD/D
24,358
7,020
Without AD/D
15,449
4,615 1,406
2,049
3,811
1,017
*This table does not include payments for all kinds of Medicare services, and as a result the average per-person
payments for specific Medicare services do not sum to the total per-person Medicare payments.
Created from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014.165
50
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
2,0012,762
668467
While more work is needed to understand the
Similarly, Medicare beneficiaries who have Alzheimer’s
underlying causes of increased use of health care
and other dementias and a serious coexisting medical
services immediately prior to and after receiving a
condition have higher average per-person payments for
diagnosis of Alzheimer’s disease, it may be attributed to
most health care services than Medicare beneficiaries
care for disability and injuries, such as falls, that might
who have the same medical condition without dementia.
result from the early stage of the disease;
Table 12 shows the average per-person Medicare
treatments
322
related to cognitive impairment or coexisting medical
payments for seven specific medical conditions among
conditions; and costs of diagnostic procedures.
beneficiaries who have Alzheimer’s disease and other
Impact of Alzheimer’s Disease and Other Dementias
on Use and Costs of Health Care in People with
Coexisting Medical Conditions
Medicare beneficiaries with Alzheimer’s disease and
other dementias are more likely than those without
dementia to have other chronic conditions.165 While
12 percent of Medicare beneficiaries age 65 and older
dementias and beneficiaries who do not have
dementia.165 Medicare beneficiaries with dementia had
higher average per-person payments in all categories
except hospital care payments for individuals with
congestive heart failure.
Use and Costs of Long-Term Care Services
with Alzheimer’s disease and other dementias have five
An estimated 58 percent of older adults with Alzheimer’s
or more chronic conditions (including Alzheimer’s and
disease and other dementias live in the community,
other dementias), only 2.5 percent of Medicare
compared with 98 percent of older adults without
beneficiaries without Alzheimer’s disease and other
Alzheimer’s disease and other dementias.190
dementias have five or more chronic conditions.165
Of those with dementia who live in the community,
Table 11 (see page 48) reports the proportion of people
75 percent live with someone and the remaining
with Alzheimer’s disease and other dementias who have
25 percent live alone.190 As their disease progresses,
certain coexisting medical conditions. In 2013,
people with Alzheimer’s disease and other dementias
38 percent of Medicare beneficiaries age 65 and older
generally receive more care from family members and
with dementia also had coronary artery disease,
other unpaid caregivers. Many people with dementia also
37 percent also had diabetes, 29 percent also had
receive paid services at home; in adult day centers,
chronic kidney disease, 28 percent also had congestive
assisted living facilities or nursing homes; or in more than
heart failure and 25 percent also had COPD.
one of these settings at different times during the often
165
People with Alzheimer’s or another dementia and a
serious coexisting medical condition (for example,
congestive heart failure) are more likely to be hospitalized
than people with the same coexisting medical condition
but without dementia (Figure 12, see page 49).165
Research has demonstrated that Medicare beneficiaries
long course of the disease. The average costs of these
services are high (assisted living, $43,200 per year,325 and
nursing home care, $80,300 to $91,250 per year),325 and
Medicaid is the only public program that covers the long
nursing home stays that most people with dementia
require in the late stages of their illnesses.
with Alzheimer’s disease and other dementias have more
Use of Long-Term Care Services by Setting
potentially avoidable hospitalizations for diabetes
Most people with Alzheimer’s disease and other dementias
complications and hypertension, meaning that the
who live at home receive unpaid help from family
hospitalizations could possibly be prevented through
members and friends, but some also receive paid home-
proactive care management in the outpatient setting.323
and community-based services, such as personal care and
Another research team found that individuals
adult day care. A study of older people who needed help to
hospitalized with heart failure are more likely to be
perform daily activities — such as dressing, bathing,
readmitted or die after hospital discharge if they also
shopping and managing money — found that those who
have cognitive impairment.324
Use and Costs of Health Care, Long-Term Care and Hospice
51
TABL E 13
Total Medicaid Costs for Americans Age 65 and Older Living with Alzheimer’s Disease
and Other Dementias by State, 2016 (in millions)
State2016
State2016
Alabama$808
Montana$150
Alaska$56
Nebraska$302
Arizona$304
Nevada$177
Arkansas$317
New Hampshire
$225
California$3,336
New Jersey
$1,929
Colorado$508
New Mexico
$192
Connecticut$883
New York
$4,178
Delaware$210
North Carolina
$1,094
District of Columbia
North Dakota
$179
$116
Florida$2,336
Ohio$2,320
Georgia$1,055
Oklahoma$457
Hawaii$197
Oregon$225
Idaho$133
Pennsylvania$3,209
Illinois$1,531
Rhode Island
$415
Indiana$935
South Carolina
$561
Iowa$602
South Dakota
$156
Kansas$420
Tennessee$971
Kentucky$664
Texas$2,278
Louisiana$657
Utah$147
Maine$180
Vermont$96
Maryland$1,061
Virginia$866
Massachusetts$1,569
Washington$453
Michigan$1,326
West Virginia
Minnesota$767
Wisconsin$706
Mississippi$529
Wyoming$75
Missouri$801
U.S.
$43,035
All cost figures are reported in 2016 dollars. State totals may not add to the U.S. total due to rounding.
Created from data from the Lewin Model. A21
52
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
$368
also had cognitive impairment were more than twice as
A recent research study demonstrated that individuals
likely as those who did not have cognitive impairment to
with dementia often move between a nursing facility,
receive paid home care.326 In addition, those who had
hospital and home, rather than remaining in a nursing
cognitive impairment and received paid services used
facility.334 In this longitudinal study of primary care
almost twice as many hours of care monthly as those who
patients with dementia, researchers found that those
did not have cognitive impairment.
discharged from a nursing facility were nearly equally as
326
People with Alzheimer’s and other dementias make up a
large proportion of all elderly people who receive adult
day services and nursing home care.
likely to be discharged home (39 percent) as discharged
to a hospital (44 percent). Individuals with dementia may
also transition between a nursing facility and hospital or
between a nursing facility, home and hospital, creating
•Adult day services. Thirty-two percent of individuals
challenges for caregivers and providers to ensure that
using adult day services have Alzheimer’s disease or
care is coordinated across settings. Other research has
other dementias,327 and 73 percent of adult day service
shown that nursing home residents frequently have
programs offer specific programs for individuals with
burdensome transitions at the end of life, including
Alzheimer’s disease and other dementias.328
admission to an intensive care unit in the last month of
•Assisted living. Forty-two percent of residents in assisted
life, late enrollment in hospice and receipt of a feeding
living facilities (that is, housing that includes services to
tube.335 The number of care transitions for nursing
assist with everyday activities, such as medication
home residents with advanced cognitive impairment
management and meals) had Alzheimer’s disease and
varies substantially across geographic regions of the
other dementias in 2010.329 Forty percent of residents
United States.336
in residential care facilities, including assisted living
facilities, have Alzheimer’s disease and other
Researchers also found that both the number of
transitions between health care settings and the odds of
dementias.330 Small residential care facilities
(4 to 25 beds) have a larger proportion of residents with
Alzheimer’s and other dementias than larger facilities
(47 percent versus 42 percent in facilities with
26 to 50 beds and 47 percent versus 37 percent in
facilities with more than 50 beds).330 Fifty-eight percent
of residential care facilities offer programs for residents
with Alzheimer’s disease and other dementias.331
•Nursing home care. Of all Medicare beneficiaries age 65
and older with Alzheimer’s disease and other dementias,
31 percent live in a nursing home.190 Of all Medicare
beneficiaries residing in a nursing home, 64 percent
have Alzheimer’s disease and other dementias.190
•Alzheimer’s special care units. An Alzheimer’s special care
unit is a dedicated unit in a nursing home that has
tailored services for individuals with Alzheimer’s and
other dementias. Nursing homes had a total of
having a feeding tube inserted at the end of life varied
across the country. Furthermore, individuals with
frequent transitions between health care settings were
more likely to have feeding tubes at the end of life, even
though feeding tube placement has little or no benefit.
These differences across geographic regions were not
explained by severity of illness, restrictions on the use
of artificial hydration and nutrition, ethnicity or gender.
They may reflect differences in the quality of care,
although more research is needed. Additionally,
researchers found that feeding tube use was highest for
people with dementia whose care was managed by a
subspecialist physician or both a subspecialist and a
general practitioner. Feeding tube use was lower among
people with dementia whose care was managed by a
general practitioner.337
73,742 beds in Alzheimer’s special care units in 2014,
Research has also demonstrated a decrease in the
a decrease of 3 percent from the previous year.
proportion of individuals with Alzheimer’s disease who
332-333
These Alzheimer’s special care unit beds accounted for
die in an acute care hospital, with end-of-life care
71 percent of all special care unit beds and 4 percent of
shifting to home and nursing homes.338 Additionally,
all nursing home beds.
more than twice as many individuals with the disease
Use and Costs of Health Care, Long-Term Care and Hospice
53
were receiving hospice care at the time of death in
•Nursing homes. The average cost for a private room in
2009 than in 2000 (48 percent in 2009 versus
a nursing home is $250 per day, or $91,250 per year.
20 percent in 2000). With the expansion of hospice care,
The average cost of a semi-private room in a nursing
the use of feeding tubes in the last 90 days of life has
home is $220 per day, or $80,300 per year.325
decreased for individuals with Alzheimer’s disease or other
dementias.339 Similarly, expansion of hospice care is also
Affordability of Long-Term Care Services
associated with a reduction in the proportion of individuals
Few individuals with Alzheimer’s disease and other
with Alzheimer’s disease and other dementias who have
dementias have sufficient long-term care insurance or
more than two hospitalizations for any reason or more
can afford to pay out of pocket for long-term care
services for as long as the services are needed.
than one hospitalization for pneumonia, urinary tract
infection, dehydration or sepsis in the last 90 days of life.
339
•Income and asset data are not available for people
Nationally, state Medicaid programs are shifting long-
with Alzheimer’s and other dementias specifically, but
term care services from institutional care to home and
50 percent of Medicare beneficiaries had incomes of
community-based services as a means to both reduce
$24,150 or less, and 25 percent had incomes of
unnecessary costs and meet the growing demand for
$14,350 or less (in 2014 dollars).342
these services by older adults. The federal and state
•Fifty percent of Medicare beneficiaries had total
governments share the management and funding of the
savings of $63,350 or less, 25 percent had savings of
program, and states differ greatly in the services covered
$11,900 or less (in 2014 dollars), and 8 percent had
by their Medicaid programs. In 2013, home and
no savings or were in debt. Median savings were
community-based services represented the majority
substantially lower for African-American and Hispanic
(51 percent) of Medicaid spending on long-term services
Medicare beneficiaries than for white Medicare
and supports, with the remaining 49 percent for
beneficiaries.342
institutional care.340 More work is needed, however, to
understand the extent to which home and communitybased services meet the needs of individuals with
Alzheimer’s disease and other dementias.
Long-Term Care Insurance
Enrollment in private long-term care insurance is more
common for older adults with higher-than-average
incomes. While only 3 percent of adults age 55 and
Costs of Long-Term Care Services
older had long-term care insurance in 2008,
Costs are high for care provided at home or in an adult day
19 percent with incomes greater than $100,000
center, an assisted living facility or a nursing home. The
had long-term care insurance.343 The average annual
following estimates are for all users of these services.
long-term care insurance premium was $2,283 in 2010
•Home care. The median cost for a paid non-medical
home health aide is $20 per hour, or $160 for an
8-hour day.325
•Adult day centers. The median cost of adult day services
is $69 per day.325 Ninety-five percent of adult day
centers provide care for people with Alzheimer’s disease
and other dementias, and 2 percent of these centers
charged an additional fee for these clients in 2012.341
•Assisted living facilities. The median cost for basic
services in an assisted living facility is $3,600 per
($2,586 in 2015 dollars).343 Private health344 and
long-term care insurance policies funded only about
7 percent of total long-term care spending in 2011,
representing $28 billion of the $404 billion total in
2015 dollars.345 The private long-term care insurance
market has consolidated since 2010. Five major
insurance carriers either exited the market or
substantially increased premiums since then, making
policies unaffordable for many individuals.346 The
Patient Protection and Affordable Care Act passed in
month, or $43,200 per year.325
54
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
2010 included a provision to create a federal long-term
These results demonstrated that African-Americans had
care insurance program, the Community Living
significantly higher costs of care than whites or
Assistance Services and Support (CLASS) Act.
Hispanics, primarily due to more inpatient care and
The provision was repealed in 2013.
greater severity of illness. These differences may be
attributable to later-stage diagnosis, which may lead to
Medicaid Costs
higher levels of disability while receiving care; delays in
Medicaid covers nursing home care and long-term care
accessing timely primary care; lack of care coordination;
services in the community for individuals who meet
and duplication of services across providers. However,
program requirements for level of care, income and
more research is needed to understand the reasons for
assets. To receive coverage, beneficiaries must have low
this health care disparity.
incomes. Most nursing home residents who qualify for
and any other monthly income, except for a very small
Programs to Reduce Avoidable Health Care
and Nursing Home Use
personal needs allowance, to pay for nursing home care.
Recent research has demonstrated that two types of
Medicaid only makes up the difference if the nursing
programs have potential for reducing avoidable health
home resident cannot pay the full cost of care or has a
care and nursing home use, with one type of program
financially dependent spouse.
focusing on the caregiver and the other focusing on the
Medicaid must spend all of their Social Security income
Total Medicaid spending for people with Alzheimer’s
care delivery team.
disease and other dementias is projected to be
Studies of the effectiveness of caregiver support
$43 billion in 2016 dollars). A21 Estimated state-by-state
programs suggest that these programs have promise for
Medicaid spending on people with Alzheimer’s and other
reducing unnecessary emergency department visits and
dementias in 2016 (in 2016 dollars) is included on
hospitalizations and reducing transitions to residential
Table 13 (see page 52). Total per-person Medicaid
care for individuals with Alzheimer’s disease and other
payments for Medicare beneficiaries age 65 and older
dementias. For example, in an evaluation of the
with Alzheimer’s and other dementias were 19 times as
Dementia Care Services Program in North Dakota,
great as Medicaid payments for other Medicare
researchers found that hospitalizations, ambulance use,
beneficiaries. Much of the difference in payments for
emergency department visits and 911 calls decreased
beneficiaries with Alzheimer’s and other dementias is
significantly after caregivers began working with the
due to the costs associated with long-term care
program, which offered them care consultations,
(nursing homes and other residential care facilities, such
resources and referrals.348 In another study, researchers
as assisted living facilities) and the greater percentage of
estimated the effects of applying the New York
people with dementia who are eligible for Medicaid.
University Caregiver Intervention on health care costs
Medicaid paid an average of $26,837 per person for
and utilization in Minnesota over 15 years. They
Medicare beneficiaries with Alzheimer’s and other
determined that this intervention, which includes
dementias living in a long-term care facility, compared
spouse and family caregiver counseling sessions, a
with $249 for those with the diagnosis living in the
weekly caregiver support group and telephone
community and an average of $590 for older adults
counseling, would increase by 5 percent the number of
without the diagnosis living in the community and
individuals with dementia who would be able to continue
long-term care facilities (Table 9, see page 46).
residing in the community. They also predicted that
190
In a study of Medicaid beneficiaries with a diagnosis of
Alzheimer’s disease, researchers found significant
differences in the costs of care by race/ethnicity.347
nearly 20 percent fewer individuals with dementia would
die in residential care,349 and that the reduced number
of transitions to residential care would lower health care
Use and Costs of Health Care, Long-Term Care and Hospice
55
costs in Minnesota by $996 million in 2011 dollars
In 2009, 6 percent of people admitted to hospices in
($1.1 billion in 2015 dollars) over the 15-year period.
the United States had a primary hospice diagnosis of
More research is needed to determine the extent to
Alzheimer’s disease (61,146 people).350 An additional
which these results apply to the broader population of
11 percent of those admitted to hospices in the
individuals with Alzheimer’s disease and other dementias
United States had a primary hospice diagnosis of
and their caregivers.
non-Alzheimer’s dementia (119,872 people).350 Hospice
Additionally, collaborative care models — models that
include not only geriatricians, but also social workers,
nurses and medical assistants — can improve care
coordination, thereby reducing health care costs
associated with hospitalizations, emergency department
visits and other outpatient visits.306 For example, an
interprofessional memory care clinic was shown to
reduce per-person health care costs by $3,474 in
2012 dollars ($3,741 in 2015 dollars) over a year for
individuals with memory problems compared with
others whose care was overseen by a primary care
provider only.306 More than half of the cost savings was
attributed to lower inpatient hospital costs. The
program was relatively low cost per person, with an
average annual cost of $618 ($665 in 2015 dollars).
Use and Costs of Hospice Care
Hospice care provides medical care, pain management
and emotional and spiritual support for people who are
dying, including people with Alzheimer’s disease and
other dementias. Hospice care also provides emotional
and spiritual support and bereavement services for
length of stay has increased over the past decade. The
average length of stay for hospice beneficiaries with
a primary hospice diagnosis of Alzheimer’s disease
increased from 67 days in 1998 to 106 days in 2009.350
The average length of stay for hospice beneficiaries
with a primary diagnosis of non-Alzheimer’s dementia
increased from 57 days in 1998 to 92 days in 2009.350
Average per-person hospice care payments for
beneficiaries with Alzheimer’s disease and other
dementias were 10 times as great as for all other
Medicare beneficiaries ($1,976 per person compared
with $193 per person).190
Projections for the Future
Total annual payments for health care, long-term care
and hospice care for people with Alzheimer’s disease
and other dementias are projected to increase from
$236 billion in 2016 to more than $1 trillion in 2050
(in 2016 dollars). This dramatic rise includes a nearly
five-fold increase in government spending under
Medicare and Medicaid and a nearly five-fold increase
in out-of-pocket spending. A21
families of people who are dying. The main purpose of
hospice is to allow individuals to die with dignity and
without pain and other distressing symptoms that often
accompany terminal illness. Individuals can receive
hospice care in their homes, assisted living residences or
nursing homes. Medicare is the primary source of
payment for hospice care, but private insurance,
Medicaid and other sources also pay for hospice care.
56
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
SPECIAL RE PORT
TH E PE R SONAL FINANCIAL IM PAC T OF
AL ZH E I M E R’S DI SE A SE ON FAM I LIE S
28
Care contributors are
P E RC E N T
more likely than non-care contributors
to struggle with having enough
money for proper meals.
57
Alzheimer’s is, by its nature, a very personal
disease. Individuals living with the disease must
grapple with changes in their ability to think and
function that threaten their identity and their
role within their families. Families are personally
affected by Alzheimer’s too. Their everyday
lives often become busier as they take on
responsibilities that the individual with
Alzheimer’s can no longer perform. And, very
often, family members become caregivers.
These and other aspects of the effects of
Alzheimer’s disease on families are well studied.
In contrast, little is known about the personal
financial impact of Alzheimer’s on families.
How much of their own money do families spend to
provide for the needs of the person with Alzheimer’s?
Does this affect everyday and long-term purchasing
decisions? Do they have to cut back on work or work
more because of the expense of caring for someone
with Alzheimer’s disease? Are families prepared to
Alarmingly, the Alzheimer’s Association survey also
revealed that many respondents had to cut back on
basic necessities — such as food and medical care —
for themselves and their families. At the same time,
many respondents did not know or had misconceptions
about what expenses Medicare and Medicaid cover,
leaving them unprepared to handle the tremendous
costs associated with the disease.
Taken together, the results of the survey point to the
significant financial burden placed on families because
their friend or family member with Alzheimer’s disease
or another dementia can no longer afford to take care
of themselves.
Alzheimer’s Association Survey
A total of 3,524 Americans (respondents) were
interviewed for the Alzheimer’s Association Family
Impact of Alzheimer’s Survey. They were first asked if
they had a relative or friend with Alzheimer’s disease or
another dementia. If they did, they were next asked if
handle the financial impact of Alzheimer’s disease?
they had paid for expenses at least once per month
Because studies on this important topic are scarce, the
friend. Those who said “Yes” were then asked a series of
Alzheimer’s Association commissioned a nationwide
scientific survey of more than 3,500 Americans who
during the preceding 12 months for their relative or
questions about the amount and personal financial
were asked these questions and more. A25 The results
reveal that many families, as well as friends, of people
with Alzheimer’s disease and other dementias are
making great sacrifices to help care for them. Survey
respondents commonly spent money from their savings
FIGURE 13
Relationships of Care Contributors to
Their Relative or Friend with Alzheimer’s
or Another Dementia
and retirement accounts, jeopardizing their own
financial security.
•
•
•
•
“I was the larger financial support person
of the family. I also carried the health
insurance and benefits, so my diagnosis
at 47 was catastrophic. We lost our home,
cars and ultimately our marriage.”
Child, 55%
Spouse/partner, 15%
Other relative, 23%
Friend, 7%
Person with younger-onset Alzheimer’s disease
Created from data from the Alzheimer’s Association
Family Impact of Alzheimer’s Survey. A25
58
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
WHAT IS A “CARE CONTRIBUTOR”?
For the purposes of this report, a person is considered a care contributor if he/she has a friend or
family member with Alzheimer’s disease or another dementia for whom he/she:
• personally paid dementia-related expenses at least once a month for the preceding year,
• provided care at least once a month for the last year or
• both.
Care contributors do not need to live with the person with dementia or provide care.
impact of contributions. Those who did not pay
Impact on Families
expenses for their friend or family member with
Out-of-Pocket Expenses Incurred by Care Contributors
dementia were next asked if they had taken care of that
person at least once a month during the preceding
12 months. If they did, they were then asked a series of
questions about the personal financial impact of
caregiving, including questions about employment and
spending, that were also asked of those who provided
financial assistance. A total of 502 respondents
provided financial assistance and/or caregiving. These
502 respondents are referred to as care contributors
in this Special Report.
The results of the Alzheimer’s Association survey
showed that care contributors spent an average of
$5,155 of their own money (out of pocket) per year to
take care of their relative or friend with Alzheimer’s or
another dementia. However, amounts varied (Figure 14).
Annual out-of-pocket costs ranged from less than
$1,000 to more than $100,000. Those who personally
incurred the highest expenses were spouses/partners,
who spent an average of over $12,000 per year, and
adult children, who spent an average of about
Care contributors could be frequent caregivers,
$4,800 per year. Some children (16 percent) spent
occasional caregivers, people who provided financial
$10,000 or more.
assistance alone or people who provided both financial
assistance and caregiving. Figure 13 shows the
relationship between care contributors and their
relative or friend with dementia. Ninety-three percent
of care contributors were family members, and
7 percent were friends.
All respondents were asked about the availability of
food in their households, the roles of Medicare and
Medicaid, and the cost and coverage provided by
long-term care insurance.
The most commonly reported expenses were food
(63 percent) and other groceries (56 percent). The
next most commonly reported expenses were travel
(49 percent), medical supplies (for example, adult
diapers, 48 percent), medications (39 percent),
non-medical in-home care (18 percent) and
in-home health care (14 percent).
While the Alzheimer’s Association survey asked about a
variety of expenses incurred by care contributors,
other research has examined total out-of-pocket
expenses for health care specifically, irrespective of
whether the expenses were paid by the person with
Special Report: The Personal Financial Impact of Alzheimer’s Disease on Families
59
Annual Out-of-Pocket Expenses Incurred by Care Contributors
FIGURE 14
Percentage
50
44%
40
30
20
17%
15%
10
8%
9%
Expenses
Less than
$1,000
$1,000 to
$2,500
$2,500 to
$5,000
1%
5%
0
$5,000 to
$10,000
$10,000
Don’t know
or more
Declined to
answer
Created from data from the Alzheimer’s Association Family Impact of Alzheimer’s Survey. A25
dementia or care contributors. One example is a recent
Medicare Current Beneficiary Survey, people living with
study using data from the Aging, Demographics, and
Alzheimer’s disease and other dementias incur an
Memory Study (ADAMS, a nationally representative
average of nearly $10,500 per year in out-of-pocket
sample of older adults and a subset of the Health and
expenses (see page 46) for health care and long-term
Retirement Study [HRS]). Researchers found that total
care services, even when receiving support from
out-of-pocket spending for health care for people with
Medicare, Medicaid and private insurance. In contrast,
dementia was more than three times the out-of-pocket
people of similar age who do not have dementia incur
expenses for people of the same age without
about $2,500 in out-of-pocket expenses annually. The
dementia.351 Another study using HRS data explored
high out-of-pocket costs paid by people with dementia
out-of-pocket spending during the last 5 years of life
may result in the quick depletion of savings and other
for people with various chronic diseases.352 The
assets, leaving not only the affected individuals, but also
researchers found that people with Alzheimer’s disease
their families and friends, vulnerable.
and other dementias had the highest out-of-pocket
spending of those with the other chronic conditions
studied. Out-of-pocket costs for those with Alzheimer’s
and other dementias were more than twice those of
people with cancer and 74 percent higher than those
for people with cardiovascular disease.
Data in the Use and Costs of Health Care, Long-Term
Care and Hospice section of 2016 Alzheimer’s Disease
Facts and Figures confirm this discrepancy in
out-of-pocket spending. Based on data from the
60
Impact on Financial Security and Household Expenses
Forty-eight percent of care contributors reported that
paying expenses for their friend or family member with
dementia had caused them to cut back on spending in
the preceding 12 months, and 43 percent reported that
paying these expenses had caused them to cut back on
saving money (Figure 15).
Twenty percent reported spending money from their
own retirement savings to help pay for dementia-related
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
Percentage of Care Contributors Who Took the Indicated Steps to Help Pay for
the Needs of Their Relative or Friend with Alzheimer’s or Another Dementia
FIGURE 15
Percentage
50
48%
40
43%
30
30%
20
20%
15%
10
13%
5%
0
Step
Cut back on
Cut back on
Spent general
Spent retirement
spending
saving
savings
savings
Borrowed
money from
friend or family
Sold assets
Took a loan
Created from data from the Alzheimer’s Association Family Impact of Alzheimer’s Survey. A25
expenses, including 45 percent of spouses/partners and
17 percent of children. The finding that care contributors
are spending money from their own savings and
retirement accounts suggests that these individuals may
be jeopardizing their own financial security to care for
those who no longer have the financial ability to pay for
their own personal health care needs. In addition, by
spending savings and retirement funds, care contributors
may unknowingly be decreasing the financial security of
Person living with Alzheimer’s disease
their children and succeeding generations.
Alarmingly, 20 percent of care contributors cut back
Thirteen percent of care contributors sold assets to
on going to the doctor themselves, 11 percent cut
help pay expenses for their friend or family member
back on buying medicine for themselves, and an
with dementia. Among the assets sold were vehicles
additional 11 percent cut back on their children’s
(42 percent), jewelry and other collectibles (22 percent),
educational expenses.
furniture (15 percent), electronics (14 percent) and a
These statistics support the idea that some care
dwelling (12 percent). Although some of these
contributors may be jeopardizing their own health, as
percentages affect a smaller number of families, for
well as their own financial well-being, to support the
individual with dementia. They also support the idea that
the financial impact of dementia on the affected
“I have much higher credit card debt. We
no longer can eat out very often. I had to
cancel my gym membership, and we are
finding ways to sell off many keepsakes
(family heirlooms, antiques, etc.) and
assets to pay living and medical expenses.
Also, we have had to cut back on doctor
visits and dental visits.”
those who have sold assets to support the person with
dementia, the impact could not be more real.
individual may decrease the educational opportunities
afforded their children and grandchildren.
Special Report: The Personal Financial Impact of Alzheimer’s Disease on Families
61
Impact on Food Security
likely to struggle with having sufficient quantities of
One of the ways the Alzheimer’s Association survey
food than were other survey respondents. Care
explored the impact of dementia-related costs on
contributors are 28 percent more likely than non-care
families was by asking respondents questions about
contributors to report that they ate less or were
their ability to feed their families. The questions were
hungry because they didn’t have enough money to
from an established and validated survey developed by
afford proper meals. These data suggest that the high
the U.S. Department of Agriculture (USDA) to measure
costs associated with providing for a person with
the concept of “household food security.”
Alzheimer’s or another dementia may be contributing
353
The survey
to food insecurity in many families.
asked care contributors how often they could not afford
to buy enough food for their household in the past
Impact on Care Contributor Employment
12 months, how often they could not afford balanced
Similarly, many care contributors for people with
meals, how often they had to skip meals because they
Alzheimer’s disease and other dementias experience
could not afford food, whether they ate less because
disruptions in employment as a result of the demands
they could not afford food and whether they had been
of caregiving.
hungry because there was not enough food. As shown
in Figure 16, care contributors for a person with
Alzheimer’s disease or another dementia were more
FIGURE 16
Percentage
Percentages of Care Contributors and Other Survey Respondents Who Said
“Yes,” “Sometimes” or “Often” to Questions About Food Security
Care contributors
All other poll respondents
40
35
30
36%
31%
30%
25
20
21%
21%
15
14%
10
13%
11%
11%
8%
5
0
Food did
Couldn’t afford
not last
balanced meals
Cut size of meals
Ate less
or skipped meals
almost every month
Created from data from the Alzheimer’s Association Family Impact of Alzheimer’s Survey. A25
62
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
Hungry because
not enough money
Many care contributors in the Alzheimer’s Association
Employment Changes Among Care
Contributors Who Cut Back Work
Hours to Support a Family Member
or Friend with Dementia
FIGURE 17
survey reported that they had to work fewer hours or
stop working entirely to support the person with
dementia (Figure 17). Thirty-five percent of care
contributors reported household income losses as a
result of these employment changes. Care contributors
and their families who experienced income losses lost
Percentage
30
an average of $15,194 compared with their income the
27%
25
year before employment changes. Among those who
reported income losses, 41 percent lost 20 percent or
20
more of their household income. An additional
23 percent lost 10 percent to nearly 20 percent
15
of their household income.
13%
10
In contrast to most studies and surveys on how
caregiving affects one’s employment, the Alzheimer’s
11%
11%
5
Association survey found that some care contributors
had to increase work — increase the number of hours
5%
0
worked, take an additional job, go back to work or
postpone retirement — to help pay expenses for their
Change
relative or friend with dementia (Figure 18).
Impact on Saving and Spending by Household Income
Many families struggle with the high cost of providing
for the expenses of both themselves and their friend or
Worked
fewer hours
household incomes of $35,000 or less, 35 percent
Lost job
Employment Changes Among Care
Contributors Who Increased Work
Hours to Support a Family Member or
Friend with Dementia
FIGURE 18
income levels may cut back on saving and spending in
household income. Among care contributors with annual
Took a
Resigned
different job from job
Created from data from the Alzheimer’s Association
Family Impact of Alzheimer’s Survey. A25
relative with dementia. Because people of different
different ways, respondents were asked their annual
Retired
early
Percentage
15
reported having to cut back on buying groceries such as
14%
bread, fruit, vegetables and meat compared with 15
percent of those with household incomes of $35,000 to
13%
11%
10
$75,000 and 10 percent of those with household
9%
incomes of more than $75,000 (Figure 19).
In a recent study,351 researchers tested the idea that
5
high out-of-pocket expenses related to dementia care
were causing people with dementia to spend less on
other health-related needs. Even though out-of-pocket
0
health care expenses for people with dementia were
Change
three times higher than for people without dementia,
the researchers found no evidence that people with
dementia were more likely than other people to forego
Worked
more hours
Postponed
Went back
to work
Took an
additional job
Created from data from the Alzheimer’s Association
Family Impact of Alzheimer’s Survey. A25
Special Report: The Personal Financial Impact of Alzheimer’s Disease on Families
63
dental or other medical expenses. The Alzheimer’s
stress that has direct implications for household
Association survey asked a different but related
members, including less access to food, health care and
question: Did care contributors cut back on paying for
medications and decreased financial stability, because of
those expenses for their relative or friend with
reduced savings and increased debt. The impact is
dementia? The survey found that it was relatively
especially strong on those having the least financial
uncommon for care contributors to cut back on
security at the outset.
purchasing prescription medications or dental or vision
care for the person with dementia.
Out-of-Pocket Expenses as a Percentage
of Household Income
Thirty percent of lower income care contributors and
In a 2015 study using HRS data,352 researchers
24 percent of middle-income care contributors
concluded that people with dementia had out-of-pocket
reported cutting back on going to the doctor
expenses during the last 5 years of life that placed a large
themselves. In addition, 19 percent of lower income
financial burden on families. Furthermore, those
care contributors and 9 percent of middle-income care
expenses placed a disproportionately high financial
contributors reported cutting back on buying medicine
burden on people who were already financially stressed.
for themselves. Although fewer in number, many
In particular, the researchers showed that out-of-pocket
respondents reported that they had to cut back on
spending during the last 5 years of life among people
filling prescriptions or providing needed dental or vision
with dementia represented an average of 32 percent of
care for their relative or friend with dementia.
their household wealth measured 5 years before death.
Altogether, these findings suggest that dementia-
However, that percentage was much higher among
people with limited financial assets, particularly certain
related expenses may contribute to household financial
Reductions in Savings or Spending by Household Income
FIGURE 19
Care contributor
household income
Percentage
Less than $35,000
$35,000-$75,000
More than $75,000
60
50
40
53%
44%
38%
30
35%
31%
30%
24%
20
10
0
19%
15%
10%
13%
8%
8%
8%
4%
3%
6%
9%
4%
6%
7%
64
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
9%
5%
Savings
Buying
Buying
Children’s
Going to
Buying
Buying
groceries
household
education
the doctor
medicine
medicine
supplies
yourself
for yourself
for person
with dementia
Created from data from the Alzheimer’s Association Family Impact of Alzheimer’s Survey. A25
11%
Dental or vision
care for person
with dementia
“Our joint income has been cut about
40 percent. I am well beyond retirement
age and continue to work to make up
for the loss of income.”
respondents believed incorrectly that Medicare pays for
nursing home care, and 37 percent did not know
whether it did. Medicare pays for inpatient hospital care,
physician-certified inpatient rehabilitation in a skilled
nursing facility after a hospital stay and various other
Caregiver
costs, but custodial care in nursing homes is not covered.
Lack of knowledge about the role of Medicaid was also
racial or ethnic groups, people with less education and
common, with 36 percent of respondents incorrectly
unmarried or widowed women. For dementia-related
believing that Medicaid was long-term care insurance
expenses during the last 5 years of life, African-Americans
and 25 percent not knowing if that was true. Medicaid
spent an average of about one-third the amount spent by
helps pay for some medical and long-term care costs for
other racial/ethnic groups ($23,425 versus $64,819).
people with limited income and resources and, in most
However, the expenses incurred by African-Americans
instances, individuals must have depleted nearly all of
represented an average of 84 percent of their household
their assets to be eligible for Medicaid.
wealth, compared with 32 percent for people from other
racial/ethnic backgrounds. Unmarried women with
“Meet with an elder care lawyer —
preferably one who has some experience in
working with those with Alzheimer’s and
other dementias, since the issue of capacity
comes into play. Develop a plan with your
family. The greatest gift you can give your
loved ones is to have your plans in place.”
dementia (never married or widowed) spent 58 percent
of their wealth on out-of-pocket expenses related to
dementia during their last 5 years of life, compared with
7 percent for married women with dementia.
This HRS study clearly illustrates that the amount of
money spent per year on dementia-related expenses
has very different financial implications for different
individuals and families. The Alzheimer’s Association
Person living with mild cognitive impairment
survey found that about 25 percent of care contributors
spent more than 10 percent of their annual household
In addition, many people believe that their medical
income for dementia-related expenses, and a small
insurance will cover long-term care, even when it
group of care contributors (about 1 in 30) spent more
doesn’t. About 30 percent of respondents believed they
than 90 percent of their annual income.
had insurance coverage for long-term care, but national
statistics indicate that only about 3 percent of all
Lack of Knowledge About the Roles
of Medicare and Medicaid
U.S. adults, and about 10 percent of adults older than 55,
actually have long-term care insurance.354 As noted in
The Alzheimer’s Association survey also asked all
3,524 respondents — regardless of whether they were
care contributors — specific questions to assess the
general public’s knowledge about the roles of Medicare
and Medicaid in helping to pay for nursing home care
the Use and Costs of Health Care, Long-Term Care and
Hospice section, long-term care insurance is expensive
and becoming more difficult to obtain (see page 54).
The lack of knowledge about Medicare, Medicaid and
long-term care insurance may leave many individuals
and other forms of long-term care.
and families unprepared for the high costs of
The results indicated widespread lack of knowledge about
long-term care for someone with Alzheimer’s
the roles of these programs. Twenty-eight percent of
disease or another dementia.
Special Report: The Personal Financial Impact of Alzheimer’s Disease on Families
65
Toward Solutions
This Special Report highlights the fact that many care
contributors for people with Alzheimer’s and other
dementias must cut back on basic necessities for
themselves and their families — necessities such as
food and their own medical care — to support their
relative or friend. However, the Use and Costs of
Health Care, Long-Term Care and Hospice section notes
that 50 percent of Medicare beneficiaries have less than
$63,350 in savings and 50 percent have incomes of
$24,150 or less (see page 54). Thus, it is clear that many
people find it difficult to save money for retirement,
•Investigate long-term care services (for example,
home care, assisted living residences and nursing
homes) in your area. Ask what types of insurance
they accept and if they accept Medicaid in case you
run out of money.
•Call the local Agency on Aging to determine what
community services and support programs are
available (for example, respite care, home maker
services and Meals on Wheels) to help alleviate
financial burdens.
•Once you understand your financial resources and what
you can afford, make a plan for how to access care.
suggesting that other solutions are needed to prepare
Additional information is available at alzheimers.gov,
families for the high out-of-pocket costs associated with
eldercare.gov and alz.org/care.
Alzheimer’s disease and other dementias. It is also clear
that better education of Americans about the roles of
Medicare, Medicaid and private insurance is needed.
For those who are able, numerous organizations
recommend that people plan and save for the possibility
of needing long-term care insurance in later life, as it
has the potential to alleviate much of the financial
burden that would otherwise be placed on families.
In addition, individuals and families may benefit from
becoming educated about the financial resources
available to them and using that information to plan for
the future. Even if a family has limited financial
resources, planning ahead and knowing what is possible
(and what is not) enables families to make the best
choices. Other tips:
•When planning for retirement, remember to think
about how to prepare for the need for long-term
medical care. After an Alzheimer’s diagnosis, your
options may be more limited.
•Check with your employer to see what types of
programs and benefits may be available to you.
•Conduct an inventory of your financial resources
(savings, insurance, retirement benefits, government
assistance, VA benefits, etc.). A financial planner or
elder care attorney can help with this.
“Purchase long-term care insurance early
before some condition prohibits purchase.
Consult a financial professional on how to
protect assets for the surviving caregiver.”
Caregiver
Conclusion
The costs of caring for a relative or friend with
Alzheimer’s disease or another dementia can have
striking effects on a household. These costs can
jeopardize the ability to buy food, leading to food
insecurity and increasing the risks of poor nutrition and
hunger. In addition, the costs can make it more difficult
for individuals and families to maintain their own health
and financial security. Lack of knowledge about the roles
of government assistance programs for older people
and those with low income is common, leaving many
families vulnerable to unexpected expenses associated
with chronic conditions such as Alzheimer’s and other
dementias. Better solutions are needed to ensure that
relatives and friends of people with dementia are not
jeopardizing their own health and financial security to
help pay for dementia-related costs.
•Learn about Medicare and the expenses it covers.
•Learn about Medicaid and who is eligible.
66
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
End Notes
A1. Six drugs approved by the U.S. Food and Drug Administration (FDA):
The FDA has approved six drugs to alleviate symptoms of Alzheimer’s
disease: tacrine (discontinued in the United States due to potentially
severe side effects), galantamine, rivastigmine, donepezil, memantine,
and a drug that combines memantine and donepezil. None of these
drugs slows or stops the progression of Alzheimer’s disease.
A2. Number of Americans age 65 and older with Alzheimer’s disease
for 2016 (prevalence of Alzheimer’s in 2016): The number 5.2 million is
from published prevalence estimates based on incidence data from the
Chicago Health and Aging Project (CHAP) and population estimates
from the 2010 U.S. Census. 33
A3. Proportion of Americans age 65 and older with Alzheimer’s disease:
The 11 percent for the age 65 and older population is calculated by
dividing the estimated number of people age 65 and older with
Alzheimer’s disease (5.2 million) by the U.S. population age 65 and
older in 2016, as projected by the U.S. Census Bureau (49.4 million) =
11 percent. Eleven percent is the same as one in nine (see 2014
National Population Projections: Downloadable Files located at https://
www.census.gov/population/projections/data/national/2014/
downloadablefiles.html).
A4. Percentage of total Alzheimer’s disease cases by age groups:
Percentages for each age group are based on the estimated 200,000
under 65, plus the estimated numbers (in millions) for people 65 to 74
(0.8), 75 to 84 (2.4), and 85+ (2.0) based on prevalence estimates for
each age group and incidence data from the Chicago Health and Aging
Project (CHAP). 33
A5. Differences between CHAP and ADAMS estimates for Alzheimer’s
disease prevalence: The Aging, Demographics, and Memory Study
(ADAMS) estimates the prevalence of Alzheimer’s disease to be lower
than does the Chicago Health and Aging Project (CHAP), at 2.3 million
Americans age 71 and older in 2002.117 (Note that the CHAP estimates
referred to in this end note are from an earlier study using 2000 U.S.
Census data.179) At a 2009 conference convened by the National
Institute on Aging and the Alzheimer’s Association, researchers
determined that this discrepancy was mainly due to two differences in
diagnostic criteria: (1) a diagnosis of dementia in ADAMS required
impairments in daily functioning and (2) people determined to have
vascular dementia in ADAMS were not also counted as having
Alzheimer’s, even if they exhibited clinical symptoms of Alzheimer’s.118
Because the more stringent threshold for dementia in ADAMS may
miss people with mild Alzheimer’s disease and because clinicalpathologic studies have shown that mixed dementia due to both
Alzheimer’s and vascular pathology in the brain is very common,6 the
Association believes that the larger CHAP estimates may be a more
relevant estimate of the burden of Alzheimer’s disease in the United
States.
A6. Number of women and men age 65 and older with Alzheimer’s
disease in the United States: The estimates for the number of U.S.
women (3.3 million) and men (1.9 million) age 65 and older with
Alzheimer’s in 2013 is from unpublished data from the Chicago Health
and Aging Project (CHAP). For analytic methods, see Hebert et al. 33
A7. Prevalence of Alzheimer’s disease and other dementias in older
whites, African-Americans and Hispanics: The statement that
African-Americans are twice as likely and Hispanics one and one-half
times as likely as whites to have Alzheimer’s disease and other
dementias is the conclusion of an expert review of a number of
multiracial and multi-ethnic data sources, as reported in detail in the
Special Report of the Alzheimer’s Association’s 2010 Alzheimer’s
Disease Facts and Figures.
A8. State-by-state prevalence of Alzheimer’s disease: These state-bystate prevalence numbers are based on an analysis of incidence data
from the Chicago Health and Aging Project (CHAP), projected to each
state’s population, with adjustments for state-specific age, gender,
years of education, race and mortality.166 Specific prevalence numbers
projected for each year from 2016 to 2025 derived from this analysis
were provided to the Alzheimer’s Association by a team led by Liesi
Hebert, Sc.D., from Rush University Institute on Healthy Aging.
A9. Number of new cases of Alzheimer’s disease this year (incidence of
Alzheimer’s in 2016): The East Boston Established Populations for
Epidemiologic Study of the Elderly (EPESE) estimated that there would
be 454,000 new cases in 2010 and 491,000 new cases in 2020. See
Hebert et al.167 The Alzheimer’s Association calculated the incidence of
new cases in 2016 by multiplying the 10-year change from 454,000 to
491,000 (37,000) by 0.6 (for the number of years from 2010 to 2016
divided by the number of years from 2010 to 2020), adding that result
(22,200) to the Hebert et al. estimate for 2010 (454,000) = 476,200.167
Rounded to the nearest thousand, this is 476,000 new cases of
Alzheimer’s disease in 2016. The same technique for linear
interpolation from 2000 to 2010 projections was used to calculate the
number of new cases in 2016 for ages 65-74, 75-84 and 85 and older.
The age group-specific Alzheimer’s disease incident rate is the number
of new people with Alzheimer’s per population at risk (the total number
of people in the age group in question). These incidence rates are
expressed as number of new cases per 1,000 people using the total
number of people per age group (e.g., 65-74, 75-84, 85+) for 2016
from population projections from the 2000 U.S. Census as the
denominator (see National Population Projections for 2016 to 2020:
Summary Tables located at http://www.census.gov/population/
projections/files/natproj/summary/np-t4-e.pdf).
A10. Number of seconds for the development of a new case of
Alzheimer’s disease: Although Alzheimer’s does not present suddenly
like stroke or heart attack, the rate at which new cases occur can be
computed in a similar way. The 66 seconds number is calculated by
dividing the number of seconds in a year (31,536,000) by the number
of new cases in a year (476,200)A9 = 66.2 seconds, rounded to
66 seconds. Using the same method of calculation for 2050,
31,536,000 divided by 959,000 (from Hebert et al.167) = 32.8 seconds,
rounded to 33 seconds.
A11. Criteria for identifying subjects with Alzheimer’s disease and other
dementias in the Framingham Study: Starting in 1975, nearly 2,800
people from the Framingham Study who were age 65 and free of
dementia were followed for up to 29 years. Standard diagnostic criteria
(DSM-IV criteria) were used to diagnose dementia in the Framingham
Study, but, in addition, the subjects had to have at least “moderate”
dementia according to the Framingham Study criteria, which is
equivalent to a score of 1 or more on the Clinical Dementia Rating
(CDR) Scale, and they had to have symptoms for six months or more.
Standard diagnostic criteria (the NINCDS-ADRDA criteria from 1984)
were used to diagnose Alzheimer’s disease. The examination for
dementia and Alzheimer’s disease is described in detail in
Seshadri et al.131 The definition of Alzheimer’s disease and other
dementias used in the Framingham Study was thus very strict; using a
definition that includes milder disease and disease of less than six
months’ duration, lifetime risks of Alzheimer’s disease and other
dementias would be much higher than those estimated by this study.
A12. Projected number of people with Alzheimer’s disease: This figure
comes from the CHAP study. 33 Other projections are somewhat lower
(see, for example, Brookmeyer et al. 355) because they relied on more
conservative methods for counting people who currently have
Alzheimer’s disease. A9 Nonetheless, these estimates are statistically
consistent with each other, and all projections suggest substantial
growth in the number of people with Alzheimer’s disease over the
coming decades.
Special Report: The Personal Financial Impact of Alzheimer’s Disease on Families
67
A13. Projected number of people age 65 and older with Alzheimer’s
disease in 2025: The number 7.1 million is based on a linear
extrapolation from the projections of prevalence of Alzheimer’s for the
years 2020 (5.8 million) and 2030 (8.4 million) from CHAP. 33
A14. Previous high and low projections of Alzheimer’s disease
prevalence in 2050: High and low prevalence projections for 2050 from
the U.S. Census were not available for the most recent analysis of CHAP
data. 33 The previous high and low projections indicate that the projected
number of Americans with Alzheimer’s in 2050 age 65 and older will
range from 11 to 16 million.179
A15. Annual mortality rate due to Alzheimer’s disease by state:
Unadjusted death rates are presented rather than age-adjusted death
rates in order to provide a clearer depiction of the true burden of
mortality for each state. States such as Florida with larger populations of
older people will have a larger burden of mortality due to Alzheimer’s.
A16. Number of family and other unpaid caregivers of people with
Alzheimer’s and other dementias: To calculate this number, the
Alzheimer’s Association started with data from the Behavioral Risk
Factor Surveillance System (BRFSS). In 2009, the BRFSS survey asked
respondents age 18 and over whether they had provided any regular
care or assistance during the past month to a family member or friend
who had a health problem, long-term illness or disability. To determine
the number of family and other unpaid caregivers nationally and by state,
we applied the proportion of caregivers nationally and for each state
from the 2009 BRFSS (as provided by the Centers for Disease Control
and Prevention, Healthy Aging Program, unpublished data) to the
number of people age 18 and older nationally and in each state from the
U.S. Census Bureau report for July 2015 (available at: www.census.gov/
popest/data/datasets.html. Accessed on Jan. 22, 2016). To calculate the
proportion of family and other unpaid caregivers who provide care for a
person with Alzheimer’s or another dementia, the Alzheimer’s
Association used data from the results of a national telephone survey
conducted in 2009 for the National Alliance for Caregiving (NAC)/
AARP.356 The NAC/AARP survey asked respondents age 18 and over
whether they were providing unpaid care for a relative or friend age
18 or older or had provided such care during the past 12 months.
Respondents who answered affirmatively were then asked about the
health problems of the person for whom they provided care. In response,
26 percent of caregivers said that: (1) Alzheimer’s or another dementia
was the main problem of the person for whom they provided care, or
(2) the person had Alzheimer’s or other mental confusion in addition to
his or her main problem. The 26 percent figure was applied to the total
number of caregivers nationally and in each state, resulting in a total of
15.864 million Alzheimer’s and dementia caregivers.
A17. The 2014 Alzheimer’s Association Women and Alzheimer’s Poll:
This poll questioned a nationally-representative sample of 3,102
American adults about their attitudes, knowledge and experiences
related to Alzheimer’s disease and dementia from Jan. 9, 2014, to
Jan. 29, 2014. An additional 512 respondents who provided unpaid
help to a relative or friend with Alzheimer’s disease or a related dementia
were asked questions about their care provision. Random selections of
telephone numbers from landline and cell phone exchanges throughout
the United States were conducted. One individual per household was
selected from the landline sample, and cell phone respondents were
selected if they were 18 years old or older. Interviews were administered
in English and Spanish. The poll “oversampled” Hispanics, selected from
U.S. Census tracts with higher than an 8 percent concentration of this
group. A list sample of Asian-Americans was also utilized to oversample
this group. A general population weight was used to adjust for number of
adults in the household and telephone usage; the second stage of this
weight balanced the sample to estimated U.S. population characteristics.
68
A weight for the caregiver sample accounted for the increased likelihood
of female and white respondents in the caregiver sample. Sampling
weights were also created to account for the use of two supplemental
list samples. The resulting interviews comprise a probability-based,
nationally representative sample of U.S. adults. A caregiver was defined
as an adult over age 18 who, in the past 12 months, provided unpaid care
to a relative or friend age 50 or older with Alzheimer’s or another
dementia. Questionnaire design and interviewing were conducted by Abt
SRBI of New York.
A18. Number of hours of unpaid care: To calculate this number, the
Alzheimer’s Association used data from a follow-up analysis of results
from the 2009 NAC/AARP national telephone survey (data provided
under contract by Matthew Greenwald and Associates, Nov. 11, 2009).
These data show that caregivers of people with Alzheimer’s and other
dementias provided an average of 21.9 hours a week of care, or 1,139
hours per year. The number of family and other unpaid caregivers
(15.864 million)A16 was multiplied by the average hours of care per year,
which totals 18.066 billion hours of care.
A19. Value of unpaid caregiving: To calculate this number, the
Alzheimer’s Association used the method of Amo et al. 357 This method
uses the average of the federal minimum hourly wage ($7.25 in 2015)
and the mean hourly wage of home health aides ($17.24 in July
2015). 358 The average is $12.25, which was multiplied by the number of
hours of unpaid care (18.066 billion) to derive the total value of unpaid
care ($221.312 billion; this is slightly higher than the total resulting
from multiplying $12.25 by 18.066 billion because 18.066 is a rounded
number for the hours of unpaid care).
A20. Higher health care costs of Alzheimer’s caregivers: This figure is
based on a methodology originally developed by Brent Fulton, Ph.D.,
for The Shriver Report: A Woman’s Nation Takes on Alzheimer’s. A survey
of 17,000 employees of a multinational firm based in the United States
estimated that caregivers’ health care costs were 8 percent higher
than non-caregivers’. 359 To determine the dollar amount represented
by that 8 percent figure nationally and in each state, the
8 percent figure and the proportion of caregivers from the 2009
Behavioral Risk Factor Surveillance System (BRFSS)A16 were used to
weight each state’s caregiver and non-caregiver per capita personal
health care spending in 2009, 360 inflated to 2015 dollars. The dollar
amount difference between the weighted per capita personal health
care spending of caregivers and non-caregivers in each state
(reflecting the 8 percent higher costs for caregivers) produced the
average additional health care costs for caregivers in each state.
Nationally, this translated into an average of $640. The amount of the
additional cost in each state, which varied by state from a low of $472
in Utah to a high of $976 in the District of Columbia, was multiplied by
the total number of unpaid Alzheimer’s and dementia caregivers in that
state A16 to arrive at that state’s total additional health care costs of
Alzheimer’s and other dementia caregivers as a result of being a
caregiver. The combined total for all states was $10.151 billion. Fulton
concluded that this is “likely to be a conservative estimate because
caregiving for people with Alzheimer’s is more stressful than caregiving
for most people who don’t have the disease.”361
A21. Lewin Model on Alzheimer’s and dementia costs: These numbers
come from a model created for the Alzheimer’s Association by the
Lewin Group and updated in January 2015. The model estimates total
payments for health care, long-term care and hospice for people with
Alzheimer’s disease and other dementias. The model originally used cost
data from the 2008 Medicare Current Beneficiary Survey (MCBS); for
the 2016 cost estimates, the cost data were updated using the 2011
MCBS. A comprehensive report on the model, Changing the Trajectory
of Alzheimer’s Disease: How a Treatment by 2025 Saves Lives and Dollars,
was published by the Alzheimer’s Association in February 2015. In June
2015, the Lewin Group added to the model estimates of state-by-state
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
Medicaid spending on people with Alzheimer’s and other dementias,
which were initially published in the Alzheimer’s Association’s
November 2015 report, The Impact of Alzheimer’s Disease on Medicaid
Costs: A Growing Burden for States. Both reports and additional
information on the model, its long-term projections and its
methodology are available at www.alz.org/trajectory.
A22. All cost estimates were inflated to year 2015 dollars using the
Consumer Price Index (CPI): All cost estimates were inflated using the
seasonally adjusted average prices for medical care services from all
urban consumers. The relevant item within medical care services was
used for each cost element. For example, the medical care item
within the CPI was used to inflate total health care payments; the
hospital services item within the CPI was used to inflate hospital
payments; and the nursing home and adult day services item within
the CPI was used to inflate nursing home payments.
A23. Medicare Current Beneficiary Survey Report: These data come
from an analysis of findings from the 2008 Medicare Current
Beneficiary Survey (MCBS). The analysis was conducted for the
Alzheimer’s Association by Julie Bynum, M.D., M.P.H., Dartmouth
Institute for Health Policy and Clinical Care, Center for Health Policy
Research.190 The MCBS, a continuous survey of a nationally
representative sample of about 16,000 Medicare beneficiaries, is
linked to Medicare Part B claims. The survey is supported by the U.S.
Centers for Medicare and Medicaid Services (CMS). For communitydwelling survey participants, MCBS interviews are conducted in
person three times a year with the Medicare beneficiary or a proxy
respondent if the beneficiary is not able to respond. For survey
participants who are living in a nursing home or another residential
care facility, such as an assisted living residence, retirement home or
a long-term care unit in a hospital or mental health facility, MCBS
interviews are conducted with a nurse who is familiar with the survey
participant and his or her medical record. Data from the MCBS
analysis that are included in 2016 Alzheimer’s Disease Facts and
Figures pertain only to Medicare beneficiaries age 65 and older. For
this MCBS analysis, people with dementia are defined as:
• Community-dwelling survey participants who answered yes to the
MCBS question, “Has a doctor ever told you that you had
Alzheimer’s disease or dementia?” Proxy responses to this
question were accepted.
• Survey participants who were living in a nursing home or other
residential care facility and had a diagnosis of Alzheimer’s disease
or dementia in their medical record.
• Survey participants who had at least one Medicare claim with a
diagnostic code for Alzheimer’s disease and other dementias in
2008. The claim could be for any Medicare service, including
hospital, skilled nursing facility, outpatient medical care, home
health care, hospice or physician, or other health care provider
visit. The diagnostic codes used to identify survey participants with
Alzheimer’s disease and other dementias are 331.0, 331.1, 331.11,
331.19, 331.2, 331.7, 331.82, 290.0, 290.1, 290.10, 290.11,
290.12, 290.13, 290.20, 290.21, 290.3, 290.40, 290.41, 290.42,
290.43, 291.2, 294.0, 294.1, 294.10 and 294.11.
Costs from the MCBS analysis are based on responses from 2008
and reported in 2015 dollars.
A24. Differences in estimated costs reported by Hurd and colleagues:
Hurd et al. 207 estimated per-person costs using data from
participants in ADAMS, a cohort in which all individuals underwent
diagnostic assessments for dementia. 2016 Alzheimer’s Disease Facts
and Figures estimated per-person costs using data from the
Medicare Current Beneficiary Survey (MCBS). One reason that the
per-person costs estimated by Hurd et al. are lower than those
reported in Facts and Figures is that ADAMS, with its diagnostic
evaluations of everyone in the study, is more likely than MCBS to
have identified individuals with less severe or undiagnosed
Alzheimer’s. By contrast, the individuals with Alzheimer’s registered
by MCBS are likely to be those with more severe, and therefore
more costly, illness. A second reason is that Hurd et al.’s estimated
costs reflect an effort to isolate the incremental costs associated
with Alzheimer’s disease and other dementias (those costs
attributed only to dementia), while the per-person costs in
2016 Alzheimer’s Disease Facts and Figures incorporate all costs of
caring for people with the disease (regardless of whether the
expenditure was related to dementia or a coexisting condition).
A25. Alzheimer’s Association Family Impact of Alzheimer’s Survey:
The survey was conducted by Abt SRBI between December 10 and
December 28, 2015. Potential respondents were contacted by
telephone using randomly dialed phone numbers for both landline
and cell phones in the United States. Cell phone respondents were
offered $10 reimbursement to cover the cost of the call. The survey
was conducted in both English and Spanish, and telephone exchanges
in regions with a high Hispanic population were oversampled to
obtain a representative sample in the final tally. In addition, a list of
people known to be Asian-American and a list of known caregivers
were used to increase the number of those respondents. The
respondents were selected if they were age 18 or older. The overall
response rate to the survey was 11.4 percent, which was determined
using the Response Rate 3 method of the American Association for
Public Opinion Research.
Responses to the Alzheimer’s Association Family Impact of
Alzheimer’s Survey are presented after population weighting
procedures were performed in several stages. The first stage of
weighting corrected for probability of selection of a respondent
associated with the number of adults in the household and the
respondent’s telephone usage, overlapping landline and cell phone
sample frames, and the relative sizes of each frame and each sample.
The correction for the number of adults in the household is because
respondents in households with more adults were less likely to be
selected; the weight ensures that we don’t over-represent adults
from smaller households and under-represent adults from larger
households. The correction for overlapping landline and cell phone
frames is needed because households with landlines and cell phones
were more likely to be selected than households with only cell
phones or a landline.
The second stage of weighting balanced the sample demographics to
estimated population parameters for age x gender, education x
gender, age x education, race and Hispanic ethnicity, and telephone
usage. This step ensures that the survey sample matches the
U.S. population with respect to age, gender, education, race/ethnicity
and telephone usage (landline only, cell phone only and landline + cell
phone). A separate weighting was performed for care contributors.
Because no official demographic benchmarks exist for this
population, benchmark estimates were derived from characteristics
of the care contributors reached in the landline and randomly dialed
digit sample, which are probability based and nationally
representative. The weight for the care contributor sample balances
all (n=502) care contributor cases to the weighted estimates for
gender and race/ethnicity derived from the landline and cell
random-digit dialed care contributors. This weighting adjusted for
the fact that the care contributors reached through the list sample
were somewhat more likely to be female and white compared with
those reached in the probability-based component of the study.
Margins of error originating from random sampling for the cohort of
care contributors are ±4.54 percentage points. Corresponding
margins of error for the overall survey sample are ±2.04 percentage
points. Additional error may derive from the wording of questions,
inaccuracy of respondent reports or other potential sources.
Appendices
69
References
1. Wilson RS, Segawa E, Boyle, PA, Anagnos SE, Hizel LP, Bennett
DA. The natural history of cognitive decline in Alzheimer’s disease.
Psychol Aging 2012;27(4):1008-17.
2. Barker WW, Luis CA, Kashuba A, Luis M, Harwood DG,
Loewenstein D, et al. Relative frequencies of Alzheimer’s disease,
Lewy body, vascular and frontotemporal dementia, and
hippocampal sclerosis in the State of Florida Brain Bank.
Alzheimer Dis Assoc Disord 2002;16(4):203-12.
3. American Psychiatric Association. Diagnostic and Statistical
Manual of Mental Disorders (5th edition). Arlington, Va.: American
Psychiatric Publishing; 2013.
4. Viswanathan A, Rocca WA, Tzourio C. Vascular risk factors and
dementia: How to move forward? Neurology 2009;72:368-74.
5. Schneider JA, Arvanitakis Z, Bang W, Bennett DA. Mixed brain
pathologies account for most dementia cases in communitydwelling older persons. Neurology 2007;69:2197-204.
6. Schneider JA, Arvanitakis Z, Leurgans SE, Bennett DA. The
neuropathology of probable Alzheimer disease and mild cognitive
impairment. Ann Neurol 2009;66(2):200-8.
7. Jellinger KA, Attems J. Neuropathological evaluation of mixed
dementia. J Neurol Sci 2007;257(1-2):80-7.
8. Jellinger KA. The enigma of mixed dementia. Alzheimers Dement
2007;3(1):40-53.
9. Clarfield AM. The decreasing prevalence of reversible dementias: An
updated meta-analysis. Arch Intern Med 2003;163(18):2219-29.
10.Fernando MS, Ince PG. MRC Cognitive Function and Ageing
Neuropathology Study Group: Vascular pathologies and cognition
in a population-based cohort of elderly people. J Neurol Sci
2004;226(1-2):13-7.
11.Verrees M, Selman WR. Management of normal pressure
hydrocephalus. Am Fam Physician 2004;70(60):1071-8.
12.Katzman R. The prevalence and malignancy of Alzheimer disease:
A major killer. Arch Neurol 1976;33(4):217-18.
13.Sperling RA, Aisen PS, Beckett LA, Bennett DA, Craft S, Fagan
AM, et al. Toward defining the preclinical stages of Alzheimer’s
disease: Recommendations from the National Institute on
Aging-Alzheimer’s Association workgroups on diagnostic
guidelines for Alzheimer’s disease. Alzheimers Dement
2011;7(3):280-92.
14.Albert MS, DeKosky ST, Dickson D, Dubois B, Feldman HH, Fox N,
et al. The diagnosis of mild cognitive impairment due to Alzheimer’s
disease: Recommendations from the National Institute on
Aging-Alzheimer’s Association workgroups on diagnostic guidelines
for Alzheimer’s disease. Alzheimers Dement 2011;7(3):270-9.
15.McKhann GM, Knopman DS, Chertkow H, Hyman BT, Jack CR,
Kawas CH, et al. The diagnosis of dementia due to Alzheimer’s
disease: Recommendations from the National Institute on
Aging-Alzheimer’s Association workgroups on diagnostic guidelines
for Alzheimer’s disease. Alzheimers Dement 2011;7(3):263-9.
16.Jack CR, Albert MS, Knopman DS, McKhann GM, Sperling RA,
Carrillo MC, et al. Introduction to the recommendations from the
National Institute on Aging-Alzheimer’s Association workgroups
on diagnostic guidelines for Alzheimer’s disease. Alzheimers
Dement 2011;7(3):257-62.
17.McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan
EM. Clinical diagnosis of Alzheimer’s disease: Report of the
NINCDS-ADRDA Work Group under the auspices of Department
of Health and Human Services Task Force on Alzheimer’s Disease.
Neurology 1984(34):939-44.
18.Villemagne VL, Burnham S, Bourgeat P, Brown B, Ellis KA, Salvado
O, et al. Amyloid ß deposition, neurodegeneration, and cognitive
decline in sporadic Alzheimer’s disease: A prospective cohort
study. Lancet Neurol 2013:12(4):357-67.
19.Reiman EM, Quiroz YT, Fleisher AS, Chen K, Velez-Pardos C,
Jimenez-Del-Rio M, et al. Brain imaging and fluid biomarker
analysis in young adults at genetic risk for autosomal dominant
Alzheimer’s disease in the presenilin 1 E280A kindred: A
case-control study. Lancet Neurol 2012:11(2):1048-56.
70
20.Jack CR, Lowe VJ, Weigand SD, Wiste HJ, Senjem ML, Knopman
DS, et al. Serial PiB and MRI in normal, mild cognitive impairment
and Alzheimer’s disease: Implications for sequence of pathological
events in Alzheimer’s disease. Brain 2009;132:1355-65.
21.Bateman RJ, Xiong C, Benzinger TL, Fagan AM, Goate A, Fox NC,
et al. Clinical and biomarker changes in dominantly inherited
Alzheimer’s disease. N Engl J Med 2012;367(9):795-804.
22.Roberts R, Knopman DS. Classification and epidemiology of MCI.
Clin Geriatr Med 2013;29(4):753-72.
23.Kantarci K, Weigand SD, Przybelski SA, Shiung MM, Whitwell JL,
Negash S, et al. Risk of dementia in MCI: Combined effect of
cerebrovascular disease, volumetric MRI, and 1H MRS. Neurology
2009;72(17):1519-25.
24.Mitchell AJ, Shiri-Feshki M. Rate of progression of mild cognitive
impairment to dementia: Meta-analysis of 41 robust inception
cohort studies. Acta Psychiatr Scand 2009:119:252-65.
25.Ward A, Tardiff S, Dye C, Arrighi HM. Rate of conversion from
prodromal Alzheimer’s disease to Alzheimer’s dementia: A
systematic review of the literature. Dement Geriatr Cogn Disord
Extra 2013;3:320-32.
26.Bekris LM, Yu CE, Bird TD, Tsuang DW. Genetics of Alzheimer
disease. J Geriatr Psychiatry Neurol 2010;23(4):213-27.
27.Goldman JS, Hahn SE, Bird T. Genetic counseling and testing for
Alzheimer disease: Joint practice guidelines of the American
College of Medical Genetics and the National Society of Genetic
Counselors. Genet Med 2011;13:597-605.
28.National Down Syndrome Society. Available at: http://www.ndss.
org/Down-Syndrome/What-Is-Down-Syndrome/. Accessed
October 22, 2015.
29.Lott IT, Dierssen M. Cognitive deficits and associated neurological
complications in individuals with Down’s syndrome. Lancet Neurol
2010;9(6):623-33.
30.Tyrrell J, Cosgrave M, McCarron M, McPherson J, Calvert J, Kelly
A, et al. Dementia in people with Down’s syndrome. Int J Geriatr
Psychiatry 2001;16:1168-74.
31.Coppus A, Evenhuis H, Verberne GJ, Visser F, van Gool P,
Eikelenboom P, et al. Dementia and mortality in persons with
Down’s syndrome. J Intellect Disabil Res 2006;50(Pt 10):768-77.
32.Hebert LE, Bienias JL, Aggarwal NT, Wilson RS, Bennett DA,
Shah RC, et al. Change in risk of Alzheimer disease over time.
Neurology 2010;75:786-91.
33.Hebert LE, Weuve J, Scherr PA, Evans DA. Alzheimer disease in
the United States (2010-2050) estimated using the 2010 Census.
Neurology 2013;80(19):1778-83.
34.Green RC, Cupples LA, Go R, Benke KS, Edeki T, Griffith PA, et al.
Risk of dementia among white and African American relatives of
patients with Alzheimer disease. JAMA 2002;287(3):329-36.
35.Fratiglioni L, Ahlbom A, Viitanen M, Winblad B. Risk factors for
late-onset Alzheimer’s disease: A population-based, case-control
study. Ann Neurol 1993;33(3):258-66.
36. Mayeux R, Sano M, Chen J, Tatemichi T, Stern Y. Risk of dementia
in first-degree relatives of patients with Alzheimer’s disease and
related disorders. Arch Neurol 1991;48(3):269-73.
37. Lautenschlager NT, Cupples LA, Rao VS, Auerbach SA, Becker R,
Burke J, et al. Risk of dementia among relatives of Alzheimer’s
disease patients in the MIRAGE Study: What is in store for the
oldest old? Neurology 1996;46(3):641-50.
38. Saunders AM, Strittmatter WJ, Schmechel D, George-Hyslop
PH, Pericak-Vance MA, Joo SH, et al. Association of
apolipoprotein E allele epsilon 4 with late-onset familial and
sporadic Alzheimer’s disease. Neurology 1993;43:1467-72.
39. Farrer LA, Cupples LA, Haines JL, Hyman B, Kukull WA, Mayeux
R, et al. Effects of age, sex, and ethnicity on the association
between apolipoprotein E genotype and Alzheimer disease: A
meta-analysis. JAMA 1997;278:1349-56.
40. Loy CT, Schofield PR, Turner AM, Kwok JBJ. Genetics of
dementia. Lancet 2014;383:828-40.
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
41. Raber J, Huang Y, Ashford JW. ApoE genotype accounts for the
vast majority of AD risk and AD pathology. Neurobiol Aging
2004;25:641-50.
42. Holtzman DM, Herz J, Bu G. Apolipoprotein E and apolipoprotein
E receptors: Normal biology and roles in Alzheimer disease. Cold
Spring Harb Perspect Med 2012;2(3):a006312.
43. Alzheimer’s Drug Discovery Foundation. What APOE Means for
Your Health. Available at: http://www.alzdiscovery.org/
cognitive-vitality/what-apoe-means-for-your-health. Accessed
November 5, 2015.
44. Spinney L. Alzheimer’s disease: The forgetting gene. Nature
2014;510(7503):26-8.
45. Chouraki V, Seshadri S. Genetics of Alzheimer’s disease. Adv
Genet 2014;87:245-94.
46. Baumgart M, Snyder HM, Carrillo MC, Fazio S, Kim H, Johns H.
Summary of the evidence on modifiable risk factors for cognitive
decline and dementia: A population-based perspective.
Alzheimers Dement 2015;11(6):718-26.
47. Institute of Medicine. Cognitive Aging: Progress in
Understanding and Opportunity for Action. Washington, D.C.:
The National Academies Press; 2015.
48. Anstey KJ, von Sanden C, Salim A, O’Kearney R. Smoking as a
risk factor for dementia and cognitive decline: A meta-analysis of
prospective studies. Am J Epidemiol 2007;166(4):367-78.
49. Rusanen M, Kivipelto M, Quesenberry CP, Zhou J, Whitmer RA.
Heavy smoking in midlife and long-term risk of Alzheimer disease
and vascular dementia. Arch Intern Med 2011;171(4):333-9.
50. Beydoun MA, Beydoun HA, Gamaldo AA, Teel A, Zonderman AB,
Wang Y. Epidemiologic Studies of Modifiable Factors Associated
with Cognition and Dementia: Systematic Review and MetaAnalysis. BMC Public Health 2014;14:643.
51. Rönnemaa E, Zethelius B, Lannfelt L, Kilander L. Vascular risk
factors and dementia: 40-year follow-up of a population-based
cohort. Dement Geriatr Cogn Disord 2011;31(6):460-6.
52. Loef M, Walach H. Midlife obesity and dementia: Meta-analysis
and adjusted forecast of dementia prevalence in the United
States and China. Obesity (Silver Spring) 2013;21(1):E51-5.
53. Anstey KJ, Cherbuin N, Budge M, Young J. Body mass index in
midlife and late-life as a risk factor for dementia: A meta-analysis
of prospective studies. Obes Rev 2011;12(5):e426-37.
54. Wu W, Brickman AM, Luchsinger J, Ferrazzano P, Pichiule P,
Yoshita M, et al. The brain in the age of old: The hippocampal
formation is targeted differentially by diseases of late life. Ann
Neurol 2008;64:698-706.
55. Gudala K, Bansal D, Schifano F, Bhansali A. Diabetes mellitus and
risk of dementia: A meta-analysis of prospective observational
studies. Diabetes Investig 2013;4(6):640-50.
56. Vagelatos NT, Eslick GD. Type 2 diabetes as a risk factor for
Alzheimer’s disease: The confounders, interactions, and
neuropathology associated with this relationship. Epidemiol Rev
2013;35(1):152-60.
57. Reitz C, Brayne C, Mayeux R. Epidemiology of Alzheimer disease.
Nat Rev Neurol 2011;7(3):137-52.
58. Crane PK, Walker R, Hubbard RA, Li G, Nathan DM, Zheng H, et
al. Glucose levels and risk of dementia. N Engl J Med
2013;369(6):540-8.
59. Sajeev G, Weuve J, McQueen MB, Blacker D. Diabetes. The
AlzRisk Database. Alzheimer Research Forum. Available at: http://
www.alzrisk.org. Accessed December 10, 2015.
60. Launer LJ, Ross GW, Petrovitch H, Masaki K, Foley D, White LR,
et al. Midlife blood pressure and dementia: The Honolulu-Asia
Aging Study. Neurobiol Aging 2000;21(1):49-55.
61. Ninomiya T, Ohara T, Hirakawa Y, Yoshida D, Doi Y, Hata J, et al.
Midlife and late-life blood pressure and dementia in Japanese
elderly: The Hisayama Study. Hypertension 2011;58(1):22-8.
62. Debette S, Seshadri S, Beiser A, Au R, Himali JJ, Palumbo C, et al.
Midlife vascular risk factor exposure accelerates structural brain
aging and cognitive decline. Neurology 2011(77):461-8.
63. Solomon A, Kivipelto M, Wolozin B, Zhou, J, Whitmer, RA. Midlife
serum cholesterol and increased risk of Alzheimer’s and vascular
dementia three decades later. Dement and Geriatr Disord
2009;28:75-80.
64. Meng XF, Yu JT, Wang HF, Tan MS, Wang C, Tan CC, et al. Midlife
vascular risk factors and the risk of Alzheimer’s disease:
A systematic review and meta-analysis. J Alzheimers Dis
2014;42(4):1295-310.
65. Willis BL, Gao A, Leonard D, DeFina LF, Berry JD. Midlife fitness
and the development of chronic conditions in later life. Arch
Intern Med 2012;172(17):1333-40.
66. Harrington M, Weuve J, Jackson JW, Blacker D. Physical
Activity. The AlzRisk Database. Alzheimer Research Forum.
Available at: http://www.alzrisk.org. Accessed December
10, 2015.
67. Barberger-Gateau P, Raffaitin C, Letenneur L, Berr C, Tzourio C,
Dartigues JF, et al. Dietary patterns and risk of dementia: The
Three-City Cohort Study. Neurology 2007;69(20):1921-30.
68. Gu Y, Nieves JW, Stern Y, Luchsinger JA, Scarmeas N. Food
combination and Alzheimer disease risk: A protective diet. Arch
Neurol 2010;67(6):699-706.
69. Lourida I, Soni M, Thompson-Coon J, Purandare N, Lang IA,
Ukoumunne OC, et al. Mediterranean diet, cognitive function,
and dementia: A systematic review. Epidemiology 2013;24:479-89.
70. Morris MC, Tangney CC, Wang Y, Sacks FM, Barnes LL, Bennett
DA, et al. MIND diet slows cognitive decline with aging.
Alzheimers Dement 2015;11(9):1015-22.
71. Loef M, Walach H. Fruit, vegetables and prevention of cognitive
decline or dementia: a systematic review of cohort studies. J
Nutr Health Aging. 2012 Jul;16(7):626-30.
72. Ngandu T, Lehtisalo J, Solomon A, Levälahti E, Ahtiluoto S,
Antikainen R, et al. A 2-year multidomain intervention of diet,
exercise, cognitive training, and vascular risk monitoring versus
control to prevent cognitive decline in at-risk elderly people
(FINGER): A randomised controlled trial. Lancet 2015;385
(9984):2255-63.
73. Fitzpatrick AL, Kuller LH, Ives DG, Lopez OL, Jagust W, Breitner
JC, et al. Incidence and prevalence of dementia in the
Cardiovascular Health Study. J Am Geriatr Soc 2004;52(2):
195-204.
74. Kukull WA, Higdon R, Bowen JD, McCormick WC, Teri L,
Schellenberg GD, et al. Dementia and Alzheimer disease
incidence: A prospective cohort study. Arch Neurol
2002;59(11):1737-46.
75. Evans DA, Bennett DA, Wilson RS, Bienias JL, Morris MC, Scherr
PA, et al. Incidence of Alzheimer disease in a biracial urban
community: Relation to apolipoprotein E allele status. Arch
Neurol 2003;60(2):185-9.
76. Stern Y. Cognitive reserve in ageing and Alzheimer’s disease.
Lancet Neurol 2012;11(11):1006-12.
77. Sando SB, Melquist S, Cannon A, Hutton M, Sletvold O, Saltvedt
I, et al. Risk-reducing effect of education in Alzheimer’s disease.
Int J Geriatr Psychiatry 2008;23(11):1156-62.
78. Roe CM, Xiong C, Miller JP, Morris JC. Education and Alzheimer
disease without dementia: Support for the cognitive reserve
hypothesis. Neurology 2007;68(3):223-8.
79. Stern Y. Cognitive reserve and Alzheimer disease. Alzheimer Dis
Assoc Disord 2006;20(2):112-7.
80. McDowell I, Xi G, Lindsay J, Tierney M. Mapping the connections
between education and dementia. J Clin Exp Neuropsychol
2007;29(2):127-41.
81. Wang H-X, Xu W, Pei J-J. Leisure activities, cognition and
dementia. BBA-Mol Basis Dis 2012;1822(3):482-91.
82. Wang H-X, Karp A, Winblad B, Fratiglioni L. Late-life
engagement in social and leisure activities is associated with a
decreased risk of dementia: A longitudinal study from the
Kungsholmen Project. Am J Epidemiol 2002;155(12):1081-7.
Appendices
71
83. Saczynski JS, Pfeifer LA, Masaki K, Korf ES, Laurin D, White L, et al.
The effect of social engagement on incident dementia: The
Honolulu-Asia Aging Study. Am J Epidemiol 2006;163(5):433-40.
84. Karp A, Paillard-Borg S, Wang H-X, Silverstein M, Winblad B,
Fratiglioni L. Mental, physical and social components in leisure
activities equally contribute to decrease dementia risk. Dement
Geriatr Cogn Disord 2005;21(2):65-73.
85. Di Marco LY, Marzo A, Muñoz-Ruiz M, Ikram MA, Kivipelto M,
Ruefenacht D, et al. Modifiable lifestyle factors in dementia: A
systematic review of longitudinal observational cohort studies. J
Alzheimers Dis 2014;42(1):119-35.
86. Krueger KR, Wilson RS, Kamenetsky JM, Barnes LL, Bienias JL,
Bennett DA. Social engagement and cognitive function in old
age. Exp Aging Res 2009;35(1):45-60.
87. Sharp ES, Reynolds CA, Pedersen NL, Gatz M. Cognitive
engagement and cognitive aging: Is openness protective?
Psychol Aging 2010;25(1):60-73.
88. Fratiglioni L, Paillard-Borg S, Winblad B. An active and socially
integrated lifestyle in late life might protect against dementia.
Lancet Neurol 2004;3(6):343-53.
89. Wilson RS, Boyle PA, Yu L, Barnes LL, Schneider JA, Bennett
DA. Life-span cognitive activity, neuropathologic burden, and
cognitive aging. Neurology 2013;81(4):314-21.
90. Ball K, Berch DB, Helmers KF, Jobe JB, Leveck MD, Marsiske M,
et al. Effects of cognitive training interventions with older adults:
A randomized controlled trial. JAMA 2002;288(18):2271-81.
91. Hall CB, Lipton RB, Sliwinski M, Katz MJ, Derby CA, Verghese J.
Cognitive activities delay onset of memory decline in persons
who develop dementia. Neurology 2009;73:356-61.
92. Wilson RS, Mendes De Leon CF, Barnes LL, Schneider JA,
Bienias JL, Evans DA, et al. Participation in cognitively
stimulating activities and risk of incident Alzheimer disease.
JAMA 2002;287(6):742-8.
93. Wilson RS, Bennett DA, Bienias JL, Aggarwal NT, Mendes De
Leon CF, Morris MC, et al. Cognitive activity and incident AD in a
population-based sample of older persons. Neurology
2002;59(12):1910-4.
94. Centers for Disease Control and Prevention. Get the stats on
traumatic brain injury in the United States. Available at: http://
www.cdc.gov/traumaticbraininjury/pdf/BlueBook_factsheet-a.
pdf. Accessed October 23, 2015.
95. National Institutes of Health. Traumatic Brain Injury. Available
at: http://www.nlm.nih.gov/medlineplus/traumaticbraininjury.
html. Accessed December 10, 2015.
96. Plassman BL, Havlik RJ, Steffens DC, Helms MJ, Newman TN,
Drosdick D, et al. Documented head injury in early adulthood
and risk of Alzheimer’s disease and other dementias. Neurology
2000;55(8):1158-66.
97. Smith DH, Johnson VE, Stewart W. Chronic neuropathologies
of single and repetitive TBI: Substrates of dementia? Nat Rev
Neurol 2013;9(4):211-21.
98. Guskiewicz KM. Association between recurrent concussion and
late-life cognitive impairment in retired professional football
players. Neurosurgery 2005;57:719-26.
99. Institute for Social Research. National Football League Player
Care Foundation Study of NFL Retired Players. Ann Arbor,
Mich.: University of Michigan; 2009.
100.Groswasser Z, Reider-Groswasser II, Schwab K, Ommaya AK,
Pridgen A, Brown HR, et al. Quantitative imaging in late TBI.
Part II: Cognition and work after closed and penetrating head
injury: A report of the Vietnam Head Injury Study. Brain Inj
2002;16(8):681-90.
101.Salazar AM, Warden DL, Schwab K, Spector J, Braverman S,
Walter J, et al. Cognitive rehabilitation for traumatic brain
injury: A randomized trial. Defense and Veterans Head Injury
Program (DVHIP) Study Group. JAMA 2000;283(23):3075-81.
72
102.Lehman EJ, Hein MJ, Baron SL, Gersic CM. Neurodegenerative
causes of death among retired National Football League players.
Neurology 2012;79(19):1970-4.
103.Omalu BI, DeKosky ST, Minster RL, Kamboh MI, Hamilton RL,
Wecht CH. Chronic traumatic encephalopathy in a National
Football League player. Neurosurgery 2005;57(1):128-34.
104.McKee AC, Stern RA, Nowinski CJ, Stein TD, Alvarez VE,
Daneshvar DH, et al. The spectrum of disease in chronic
traumatic encephalopathy. Brain 2013;136(Pt 1):43-64.
105.Monti JM, Voss MW, Pence A, McAuley E, Kramer AF, Cohen
NJ. History of mild traumatic brain injury is associated with
deficits in relational memory, reduced hippocampal volume, and
less neural activity later in life. Front Aging Neurosci 2013;5:41.
106.Cummings JL, Morstorf T, Zhong K. Alzheimer’s disease
drug-development pipeline: Few candidates, frequent failures.
Alzheimer Res Therapy 2014;6:37.
107.Cochrane Summaries. Dementia and Chronic Cognitive
Impairment. http://summaries.cochrane.org/search/site/
dementia%20and%20chronic%20cognitive%20impairment.
Accessed December 10, 2015.
108.Vickrey BG, Mittman BS, Connor KI, Pearson ML, Della Penna RD,
Ganiats TG, et al. The effect of a disease management intervention
on quality and outcomes of dementia care: A randomized,
controlled trial. Ann Intern Med 2006:145(10):713-26.
109.Voisin T, Vellas B. Diagnosis and treatment of patients with
severe Alzheimer’s disease. Drugs Aging 2009;26(2):135-44.
110.Grossberg GT, Christensen DD, Griffith PA, Kerwin DR, Hunt G,
Hall EJ. The art of sharing the diagnosis and management of
Alzheimer’s disease with patients and caregivers:
Recommendations of an expert consensus panel. Prim Care
Companion J Clin Psychiatry 2010;12(1):PCC.09cs00833.
111.Hyman BT, Phelps, CH, Beach TG, Bigio EH, Cairns NJ, Carrillo
MC, et al. National Institute on Aging-Alzheimer’s Association
guidelines on neuropathologic assessment of Alzheimer’s
disease. Alzheimers Dement 2012;8(1):1-13.
112.Petersen RC, Roberts RO, Knopman DS, Geda YE, Cha RH,
Pankratz VS, et al. Prevalence of mild cognitive impairment is
higher in men. Neurology 2010;(75):889-97.
113.Ganguli M, Snitz BE, Saxton JA, Chang CH, Lee C, Vanderbilt J,
et al. Outcomes of mild cognitive impairment by definition: A
population study. Arch Neurol 2011;68(8):761-7.
114.McKhann GM, Albert MS, Sperling RA. Changing diagnostic
concepts of Alzheimer’s Disease. In: Hampel H, Carrillo MC,
editors. Alzheimer’s Disease —Modernizing concept, biological
diagnosis and therapy. Basel, Switzerland: Karger; 2012: p.
115-21.
115.Bloudek LM, Spackman ED, Blankenburg M, Sullivan SD. Review
and meta-analysis of biomarkers and diagnostic imaging in
Alzheimer’s disease. J Alzheimers Dis 2011;26:627-45.
116.Alzheimer’s Association. Early-Onset Dementia: A National
Challenge, a Future Crisis. Washington, D.C.: Alzheimer’s
Association; 2006.
117. Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR,
Ofstedal MB, et al. Prevalence of dementia in the United States:
The Aging, Demographics, and Memory Study.
Neuroepidemiology 2007;29(1-2):125-32.
118.Wilson RS, Weir DR, Leurgans SE, Evans DA, Hebert LE, Langa
KM, et al. Sources of variability in estimates of the prevalence of
Alzheimer’s disease in the United States. Alzheimers Dement
2011;7(1):74-9.
119.Boustani M, Peterson B, Hanson L, Harris R, Lohr KN. Screening
for dementia in primary care: A summary of the evidence for the
U.S. Preventive Services Task Force. Ann Intern Med
2003;138(11):927-37.
120.Bradford A, Kunik ME, Schultz P, Williams SP, Singh H. Missed and
delayed diagnosis of dementia in primary care: Prevalence and
contributing factors. Alz Dis Assoc Disord 2009;23(4):306-14.
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
121.Kotagal V, Langa KM, Plassman BL, Fisher GG, Giordani BJ,
Wallace RB, et al. Factors associated with cognitive evaluations
in the United States. Neurology 2015;84(1):64-71.
122.Barrett AM, Orange W, Keller M, Damgaard P, Swerdlow RH.
Short-term effect of dementia disclosure: How patients and
families describe the diagnosis. J Am Geriatr Soc
2006;54(12):1968-70.
123.Campbell P, Wright J, Oyebode J, Job D, Crome P, Bentham P,
et al. Determinants of burden in those who care for someone
with dementia. Int J Geriatr Psychiatry 2008;23(10):1078-85.
124.Zaleta AK, Carpenter BD, Porensky EK, Xiong C, Morris JC.
Agreement on diagnosis among patients, companions, and
professionals after a dementia evaluation. Alzheimer Dis Assoc
Disord 2012;26(3):232-7.
125.Reisberg B, Gauthier S. Current evidence for subjective
cognitive impairment (SCI) as the pre-mild cognitive impairment
(MCI) stage of subsequently manifest Alzheimer’s disease. Int
Psychogeriatr 2008;20(1):1-16.
126.Jessen F, Wiese B, Bachmann C, Eifflaender-Gorfer S, Haller F,
Kölsch H, et al. Prediction of dementia by subjective memory
impairment: Effects of severity and temporal association with
cognitive impairment. Arch Gen Psychiatry 2010;67(4):414-22.
127.Jessen F, Amariglio RE, van Boxtel M, Breteler M, Ceccaldi M,
Chételat G, et al. A conceptual framework for research on
subjective cognitive decline in preclinical Alzheimer’s disease.
Alzheimers Dement 2014;10(6):844-52.
128.Kaup AR, Nettiksimmons J, LeBlanc ES, Yaffe K. Memory
complaints and risk of cognitive impairment after nearly 2
decades among older women. Neurology 2015;85(21):1852-8.
129.Reisberg B, Shulman MB, Torossian C, Leng L, Zhu W. Outcome
over seven years of healthy adults with and without subjective
cognitive impairment. Alzheimers Dement 2010;6(1):11-24.
130.Unpublished data provided to the Alzheimer’s Association by the
Healthy Aging Program, Centers for Disease Control and
Prevention (CDC).
131.Seshadri S, Wolf PA, Beiser A, Au R, McNulty K, White R, et al.
Lifetime risk of dementia and Alzheimer’s disease. The impact of
mortality on risk estimates in the Framingham Study. Neurology
1997;49(6):1498-504.
132.Hebert LE, Scherr PA, McCann JJ, Beckett LA, Evans DA. Is the
risk of developing Alzheimer’s disease greater for women than
for men? Am J Epidemiol 2001;153(2):132-6.
133.Chene G, Beiser A, Au R, Preis SR, Wolf PA, Dufouil C, et al.
Gender and incidence of dementia in the Framingham Heart Study
from mid-adult life. Alzheimers Dement 2015;11(3):310-20.
134.Bachman DL, Wolf PA, Linn RT, Knoefel JE, Cobb JL, Belanger
AJ, et al. Incidence of dementia and probable Alzheimer’s disease
in a general population: The Framingham Study. Neurology
1993;43(3 Pt 1):515-9.
135.Rocca WA, Cha RH, Waring SC, Kokmen E. Incidence of dementia
and Alzheimer’s disease: A reanalysis of data from Rochester,
Minn., 1975-1984. Am J Epidemiol 1998;148(1):51-62.
136.Barnes LL, Wilson RS, Schneider JA, Bienias JL, Evans DA,
Bennett DA. Gender, cognitive decline, and risk of AD in older
persons. Neurology 2003;60(11):1777-81.
137.Miech RA, Breitner JC, Zandi PP, Khachaturian AS, Anthony JC,
Mayer L. Incidence of AD may decline in the early 90s for men,
later for women: The Cache County Study. Neurology
2002;58(2):209-18.
138.Fillenbaum GG, Heyman A, Huber MS, Woodbury MA, Leiss J,
Schmader KE, et al. The prevalence and 3-year incidence of
dementia in older black and white community residents. J Clin
Epidemiol 1998;51(7):587-95.
139.Carter CL, Resnick EM, Mallampalli M, Kalbarczyk A. Sex and
gender differences in Alzheimer’s disease: Recommendations for
future research. J Womens Health 2012;21(10):1018-23.
140.Altmann A, Tian L, Henderson VW, Greicius MD, Alzheimer’s
Disease Neuroimaging Initiative Investigators. Sex modifies the
APOE-related risk of developing Alzheimer disease. Ann Neurol
2014;75(4):563-73.
141.Ungar L, Altmann A, Greicius MD. Apolipoprotein E, gender, and
Alzheimer’s disease: An overlooked, but potent and promising
interaction. Brain Imaging Behav 2014;8(2):262-73.
142.Yaffe K, Haan M, Byers A, Tangen C, Kuller L. Estrogen use,
APOE, and cognitive decline: Evidence of gene-environment
interaction. Neurology 2000;54(10):1949-54.
143.Kang JH, Grodstein F. Postmenopausal hormone therapy, timing
of initiation, APOE and cognitive decline. Neurobiol Aging
2012;33(7):1129-37.
144.Barrett-Connor E, Laughlin GA. Endogenous and exogenous
estrogen, cognitive function, and dementia in postmenopausal
women: Evidence from epidemiologic studies and clinical trials.
Semin Reprod Med 2009;27(3):275-82.
145.O’Brien J, Jackson JW, Grodstein F, Blacker D, Weuve J.
Postmenopausal hormone therapy is not associated with risk of
all-cause dementia and Alzheimer’s disease. Epidemiol Rev
2014;36:83-103.
146.Rocca WA, Bower JH, Maraganore DM, Ahlskog JE, Grossardt
BR, de Andrade M, et al. Increased risk of cognitive impairment
or dementia in women who underwent oophorectomy before
menopause. Neurology 2007;69(11):1074-83.
147. Bove R, Secor E, Chibnik LB, Barnes LL, Schneider JA, Bennett
DA, et al. Age at surgical menopause influences cognitive decline
and Alzheimer pathology in older women. Neurology
2014;82(3):222-9.
148.Dilworth-Anderson P, Hendrie HC, Manly JJ, Khachaturian AS,
Fazio S. Diagnosis and assessment of Alzheimer’s disease in
diverse populations. Alzheimers Dement 2008;4(4):305-9.
149.Manly JJ, Mayeux R. Ethnic differences in dementia and
Alzheimer’s disease. In: Anderson N, Bulatao R, Cohen B, eds.
Critical perspectives on racial and ethnic differentials in health in
late life. Washington, D.C.: National Academies Press; 2004:
p. 95-141.
150.Demirovic J, Prineas R, Loewenstein D, Bean J, Duara R, Sevush
S, et al. Prevalence of dementia in three ethnic groups: The
South Florida Program on Aging and Health. Ann Epidemiol
2003;13(6):472-78.
151.Harwood DG, Ownby RL. Ethnicity and dementia. Curr Psych
Report 2000;2(1):40-5.
152.Perkins P, Annegers JF, Doody RS, Cooke N, Aday L, Vernon
SW. Incidence and prevalence of dementia in a multiethnic
cohort of municipal retirees. Neurology 1997;49(1):44-50.
153.Potter GG, Plassman BL, Burke JR, Kabeto MU, Langa KM,
Llewellyn DJ, et al. Cognitive performance and informant reports
in the diagnosis of cognitive impairment and dementia in African
Americans and whites. Alzheimers Dement 2009;5(6):445-53.
154.Gurland BJ, Wilder DE, Lantigua R, Stern Y, Chen J, Killeffer EH,
et al. Rates of dementia in three ethnoracial groups. Int J
Geriatr Psychiatry 1999;14(6):481-93.
155.Haan MN, Mungas DM, Gonzalez HM, Ortiz TA, Acharya A,
Jagust WJ. Prevalence of dementia in older latinos: The
influence of type 2 diabetes mellitus, stroke and genetic factors.
J Am Geriatr Soc 2003;51:169-77.
156.Samper-Ternent R, Kuo YF, Ray LA, Ottenbacher KJ, Markides
KS, Al Snih S. Prevalence of health conditions and predictors of
mortality in oldest old Mexican Americans and non-Hispanic
whites. J Am Med Dir Assn 2012;13(3):254-9.
157.Yaffe K, Falvey C, Harris TB, Newman A, Satterfield S, Koster A,
et al. Effect of socioeconomic disparities on incidence of
dementia among biracial older adults: Prospective study. BMJ
2013;347:f7051.
Appendices
73
158.Reitz C, Jun G, Naj A, Rajbhandary R, Vardarajan BN, Wang LS,
et al. Variants in the ATP-binding cassette transporter (ABC A7),
apolipoprotein E epsilon 4, and the risk of late-onset Alzheimer
disease in African Americans. JAMA 2013;309(14):1483-92.
159.Froehlich TE, Bogardus ST, Jr., Inouye SK. Dementia and race:
Are there differences between African Americans and
Caucasians? J Am Geriatr Soc 2001;49(4):477-84.
160.Chin AL, Negash S, Hamilton R. Diversity and disparity in
dementia: The impact of ethnoracial differences in Alzheimer
disease. Alzheimer Dis Assoc Disord 2011;25(3):187-95.
161.Lines LM, Sherif NA, Wiener JM. Racial and ethnic disparities
among individuals with Alzheimer’s disease in the United States: A
literature review. Research Triangle Park, NC: RTI Press; 2014.
162.Glymour MM, Manly JJ. Lifecourse social conditions and racial
and ethnic patterns of cognitive aging. Neuropsychol Rev
2008;18(3):223-54.
163.Clark PC, Kutner NG, Goldstein FC, Peterson-Hazen S, Garner
V, Zhang R, et al. Impediments to timely diagnosis of Alzheimer’s
disease in African Americans. J Am Geriatr Soc
2005;53(11):2012-7.
164.Fitten LJ, Ortiz F, Ponton M. Frequency of Alzheimer’s disease
and other dementias in a community outreach sample of
Hispanics. J Am Geriatr Soc 2001;49(10):1301-8.
165.Unpublished tabulations based on data from the National 5%
Sample Medicare Fee-for-Service Beneficiaries for 2014.
Prepared under contract by Avalere Health, January 2016.
166.Weuve J, Hebert LE, Scherr PA, Evans DA. Prevalence of
Alzheimer disease in U.S. states. Epidemiology 2015;26(1):e4-6.
167.Hebert LE, Beckett LA, Scherr PA, Evans DA. Annual incidence
of Alzheimer disease in the United States projected to the years
2000 through 2050. Alzheimer Dis Assoc Disord
2001;15(4):169-73.
168.Seshadri S, Beiser A, Kelly-Hayes M, Kase CS, Au R, Kannel WB,
et al. The lifetime risk of stroke: Estimates from the Framingham
Study. Stroke 2006;37(2):345-50.
169.Manton KC, Gu XL, Ukraintseva SV. Declining prevalence of
dementia in the U.S. elderly population. Adv Gerontol
2005;16:30-7.
170.Langa KM, Larson EB, Karlawish JH, Cutler DM, Kabeto MU, Kim
SY, et al. Trends in the prevalence and mortality of cognitive
impairment in the United States: Is there evidence of a
compression of cognitive morbidity? Alzheimers Dement
2008;4(2):134-44.
171.Schrijvers EM, Verhaaren BF, Koudstaal PJ, Hofman A, Ikram
MA, Breteler MM. Is dementia incidence declining? Trends in
dementia incidence since 1990 in the Rotterdam Study.
Neurology 2012;78(19):1456-63.
172.Qiu C, von Strauss E, Backman L, Winblad B, Fratiglioni L.
Twenty-year changes in dementia occurrence suggest
decreasing incidence in central Stockholm, Sweden. Neurology
2013;80(20):1888-94.
173.Christensen K, Thinggaard M, Oksuzyan A, Steenstrup T,
Andersen-Ranberg K, Jeune B, et al. Physical and cognitive
functioning of people older than 90 years: A comparison of two
Danish cohorts born 10 years apart. Lancet
2013;382(9903):1507-13.
174.Dodge HH, Zhu J, Lee CW, Chang CC, Ganguli M. Cohort
effects in age-associated cognitive trajectories. J Gerontol A
Biol Sci Med Sci 2014;69(6):687-94.
175.Satizabal CL, Beiser AS, Chouraki V, Chene G, Dufouil C,
Seshadri S. Incidence of dementia over three decades in the
Framingham Heart Study. NEJM 2016;374:523-32.
176.Doblhammer G, Fink A, Zylla S, Fritze T, Willekens F. Short-term
trends in German dementia prevalence, incidence, and mortality.
Presentation at the Alzheimer’s Association International
Conference; July 16, 2014.
74
177. Matthews FE, Arthur A, Barnes LE, et al. A two-decade
comparison of prevalence of dementia in individuals aged 65
years and older from three geographical areas of England:
Results of the Cognitive Function and Ageing Study I and II.
Lancet 2013;382(9902):1405-12.
178.Ortman JM, Velkoff VA, Hogan H. An Aging Nation: The Older
Population in the United States, Current Population Reports,
P25-1140. U.S. Census Bureau, Washington, D.C. 2014. Available
at: http://www.census.gov/content/dam/Census/library/
publications/2014/demo/p25-1140.pdf. Accessed November
6, 2015.
179.Hebert LS, Scherr PA, Bienias JL, Bennett DA, Evans DA.
Alzheimer’s disease in the U.S. population: Prevalence estimates
using the 2000 Census. Arch Neurol 2003;60:1119-22.
180.Xu JQ, Murphy SL, Kochanek KD, Bastian BA. Deaths: Final data
for 2013. National vital statistics reports; vol 64 no 2.
Hyattsville, MD: National Center for Health Statistics. 2016.
Available at: http://www.cdc.gov/nchs/data/nvsr/nvsr64/
nvsr64_02.pdf. Accessed March 4, 2016.
181.World Health Organization. International Statistical
Classification of Diseases and Related Health Problems. 10th
revision. 2nd edition. Geneva, Switzerland; 2004.
182.Ives DG, Samuel P, Psaty BM, Kuller LH. Agreement between
nosologist and Cardiovascular Health Study review of deaths:
Implications of coding differences. J Am Geriatr Soc
2009;57(1):133-9.
183.Romero JP, Benito-Leon J, Mitchell AJ, Trincado R, BermejoPareja F. Under reporting of dementia deaths on death
certificates using data from a population-based study
(NEDICES). J Alzheimers Dis 2014;39(4):741-8.
184.Romero JP, Benito-Leon J, Louis ED, Bermejo-Pareja F. Under
reporting of dementia deaths on death certificates: A systematic
review of population-based cohort studies. J Alzheimers Dis
2014;41(1):213-21.
185.Burns A, Jacoby R, Luthert P, Levy R. Cause of death in
Alzheimer’s disease. Age Ageing 1990;19(5):341-44.
186.Brunnstrom HR, Englund EM. Cause of death in patients with
dementia disorders. Eur J Neurol 2009;16(4):488-92.
187.James BD, Leurgans SE, Hebert LE, Scherr PA, Yaffe K, Bennett
DA. Contribution of Alzheimer disease to mortality in the United
States. Neurology 2014;82(12):1045-50.
188.Ganguli M, Rodriguez EG. Reporting of dementia on death
certificates: A community study. J Am Geriatr Soc
1999;47(7):842-9.
189.Weuve J, Hebert LE, Scherr PA, Evans DA. Deaths in the United
States among persons with Alzheimer’s disease (2010-2050).
Alzheimers Dement 2014;10(2):e40-6.
190.Unpublished tabulations based on data from the Medicare
Current Beneficiary Survey for 2008. Prepared under contract by
Julie Bynum, M.D., M.P.H., Dartmouth Institute for Health Policy
and Clinical Care, Dartmouth Medical School; November 2011.
191.Tinetti ME, McAvay GJ, Murphy TE, Gross CP, Lin H, Allore HG.
Contribution of individual diseases to death in older adults with
multiple diseases. J Am Geriatr Soc 2012;60(8):1448-56.
192.Arrighi HM, Neumann PJ, Lieberburg IM, Townsend RJ. Lethality
of Alzheimer disease and its impact on nursing home placement.
Alzheimer Dis Assoc Disord 2010;24(1):90-5.
193.Tejada-Vera B. Mortality from Alzheimer’s disease in the United
States: Data for 2000 and 2010. National Center for Health
Statistics Data Brief, No. 116. National Center for Health
Statistics, Hyattsville, Md.; 2013.
194.Ganguli M, Dodge HH, Shen C, Pandav RS, DeKosky ST.
Alzheimer disease and mortality: A 15-year epidemiological
study. Arch Neurol 2005;62(5):779-84.
195.Waring SC, Doody RS, Pavlik VN, Massman PJ, Chan W. Survival
among patients with dementia from a large multi-ethnic
population. Alzheimer Dis Assoc Disord 2005;19(4):178-83.
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
196.Brookmeyer R, Corrada MM, Curriero FC, Kawas C. Survival
following a diagnosis of Alzheimer disease. Arch Neurol
2002;59(11):1764-7.
197.Larson EB, Shadlen MF, Wang L, McCormick WC, Bowen JD,
Teri L, et al. Survival after initial diagnosis of Alzheimer disease.
Ann Intern Med 2004;140(7):501-9.
198.Helzner EP, Scarmeas N, Cosentino S, Tang MX, Schupf N, Stern
Y. Survival in Alzheimer disease: A multiethnic, population-based
study of incident cases. Neurology 2008;71(19):1489-95.
199.Xie J, Brayne C, Matthews FE. Survival times in people with
dementia: Analysis from a population based cohort study with
14-year follow-up. BMJ 2008;336(7638):258-62.
200.Mitchell SL, Teno JM, Miller SC, Mor V. A national study of the
location of death for older persons with dementia. J Am Geriatr
Soc 2005;53(2):299-305.
201.U.S. Burden of Disease Collaborators. The state of U.S. health,
1990-2010: Burden of diseases, injuries, and risk factors. JAMA
2013;310(6):591-608.
202.Gaugler JE, Kane RL, Kane RA. Family care for older adults with
disabilities: Toward more targeted and interpretable research.
Int J Aging Hum Dev 2002;54(3):205-31.
203.Schulz R, Quittner AL. Caregiving through the life-span:
Overview and future directions. Health Psychol 1998;17:107-11.
204.Friedman EM, Shih RA, Langa KM, Hurd MD. U.S. prevalence and
predictors of informal caregiving for dementia. Health Aff
2015;34(10):1637-41.
205.Walmart 2014 Annual Report. Available at: http://s2.q4cdn.
com/056532643/files/doc_financials/2014/Annual/2014annual-report.pdf. Accessed March 4, 2016.
206.McDonald’s Corporation Report. Available at: http://news.
mcdonalds.com/Corporate/Press-Releases/FinancialRelease?xmlreleaseid=123060. Accessed November 6, 2015.
207.Hurd MD, Martorell P, Delavande A, Mullen KJ, Langa KM.
Monetary costs of dementia in the United States. N Engl J Med
2013;368:1326-34.
208.Kasper JD, Freedman VA, Spillman BC, Wolff JL. The
disproportionate impact of dementia on family and unpaid
caregiving to older adults. Health Aff 2015;34(10):1642-49.
209.Kasper JD, Freedman VA, Spillman BC. Disability and Care
Needs of Older Americans by Dementia Status: An Analysis of
the 2011 National Health and Aging Trends Study. U.S.
Department of Health and Human Services; 2014. Available at:
http://aspe.hhs.gov/report/disability-and-care-needs-olderamericans-dementia-status-analysis-2011-national-healthand-aging-trends-study. Accessed November 6, 2015.
210.Bouldin ED, Andresen E. Caregiving Across the United States:
Caregivers of Persons with Alzheimer’s Disease or Dementia in
8 States and the District of Columbia. Data from the 2009 &
2010 Behavioral Risk Factor Surveillance System. Available at:
http://www.alz.org/documents_custom/public-health/20092010-combined-caregiving.pdf. Accessed November 6, 2015.
211.Langa KM, Plassman BL, Wallace RB, Herzog AR, Heeringa SG,
Ofstedal MB, et al. The Aging, Demographics, and Memory
Study: Study design and methods. Neuroepidemiology
2005;25(4)181-91.
212.Fisher GG, Franks MM, Plassman BL, Brown SL, Potter GG,
Llewellyn D, et al. Caring for individuals with dementia and
cognitive impairment, not dementia: Findings from The Aging,
Demographics, and Memory Study. J Am Geriatr Soc
2011;59(3):488-94.
213.National Alliance for Caregiving and United Hospital Fund. Young
Caregivers in the U.S.: Report of Findings; September 2005.
Available at: www.caregiving.org. Accessed December 6, 2015.
214.National Alliance for Caregiving and AARP. Caregiving in the
U.S.: Unpublished data analyzed under contract for the
Alzheimer’s Association; 2009.
215.Alzheimer’s Association. 2014 Alzheimer’s Disease Facts and
Figures. Special report: Women and Alzheimer’s disease.
Available at: https://www.alz.org/downloads/Facts_
Figures_2014.pdf. Accessed December 22, 2015.
216.National Alliance for Caregiving and AARP. Caregiving in the
U.S. (2015). Available at: http://www.caregiving.org/wp-content/
uploads/2015/05/2015_CaregivingintheUS_Final-ReportJune-4_WEB.pdf. Accessed November 6, 2015.
217. Spillman B, Wolff J, Freedman VA, Kasper JD. Informal
Caregiving for Older Americans: An Analysis of the 2011
National Health and Aging Trends Study. Available at: http://
aspe.hhs.gov/daltcp/reports/2014/NHATS-IC.cfm. Accessed
November 6, 2015.
218.Gillespie R, Mullan J, Harrison L. Managing medications: The
role of informal caregivers of older adults and people living with
dementia. A review of the literature. J Clin Nurs 2014;23(2324):3296-308.
219.Garity J. Caring for a family member with Alzheimer’s disease:
Coping with caregiver burden post-nursing home placement. J
Gerontol Nurs 2006;32(6):39-48.
220.Port CL, Zimmerman S, Williams CS, Dobbs D, Preisser JS,
Williams SW. Families filling the gap: Comparing family
involvement for assisted living and nursing home residents with
dementia. Gerontologist 2005;45(Special Issue 1):87-95.
221.Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S.
Long-term care placement of dementia patients and caregiver
health and well-being. JAMA 2004;292(8):961-7.
222.Gaugler JE, Mittelman MS, Hepburn K, Newcomer R. Clinically
significant changes in burden and depression among dementia
caregivers following nursing home admission. BMC Medicine
2010;8:85.
223.Mausbach BT, Chattillion EA, Ho J, Flynn LM, Tiznado D, von
Känel R, Patterson TL, Grant I. Why does placement of persons
with Alzheimer’s disease into long-term care improve caregivers’
well-being? Examination of psychological mediators. Psychol
Aging 2014;29(4):776-86.
224.Rattinger GB, Schwartz S, Mullins CD, Corcoran C, Zuckerman
IH, Sanders C, et al. Dementia severity and the longitudinal costs
of informal care in the Cache County population. Alzheimers
Dement 2015;11(8):946-54.
225.Ornstein K, Gaugler JE. The problem with “problem behaviors”:
A systematic review of the association between individual
patient behavioral and psychological symptoms and caregiver
depression and burden within the dementia patient-caregiver
dyad. Int Psychogeriatr 2012;24(10):1536-52.
226.Kiecolt-Glaser JK, Glaser R, Gravenstein S, Malarkey WB,
Sheridan J. Chronic stress alters the immune response to
influenza virus vaccine in older adults. Proc Natl Acad Sci
1996;93:3043-7.
227.Schulz R, Beach SR. Caregiving as a risk factor for mortality: The
Caregiver Health Effects Study. JAMA 1999;282:2215-60.
228.Vitaliano PP, Zhang J, Scanlan JM. Is caregiving hazardous to
one’s physical health? A meta-analysis. Psychol Bull
2003;129(6):946-72.
229.Liu W, Gallagher-Thompson D. Impact of dementia caregiving:
Risks, strains, and growth. In: Qualls SH, Zarit SH, eds. Aging
families and caregiving. Hoboken, N.J.: John Wiley & Sons, Inc.;
2009: p. 85-112.
230.Pinquart M, Sörensen S. Associations of stressors and uplifts of
caregiving with caregiver burden and depressive mood: A
meta-analysis. J Gerontol B Psychol Sci Soc Sci 2003;58(2):112-28.
231.Sörensen S, Duberstein P, Gill D, Pinquart M. Dementia care:
Mental health effects, intervention strategies, and clinical
implications. Lancet Neurol 2006;5(11):961-73.
232.Zarit S. Positive aspects of caregiving: More than looking on the
bright side. Aging Ment Health 2012;16(6):673-74.
Appendices
75
233.Schulz R, O’Brien AT, Bookwala J, Fleissner K. Psychiatric and
physical morbidity effects of dementia caregiving: Prevalence,
correlates, and causes. Gerontologist 1995;35(6):771-91.
234.Baumgarten M, Battista RN, Infante-Rivard C, Hanley JA,
Becker R, Gauthier S. The psychological and physical health of
family members caring for an elderly person with dementia. J
Clin Epidemiol 1992;45(1):61-70.
235.Mausbach BT, Chattillion EA, Roepke SK, Patterson TL, Grant I.
A comparison of psychosocial outcomes in elderly Alzheimer
caregivers and noncaregivers. Am J Geriatr Psychiatry
2013;21(1):5-13.
236.Kessler RC, Chiu WT, Demler O, Merikangas KR, Walters EE.
Prevalence, severity, and comorbidity of 12-month DSM-IV
disorders in the National Comorbidity Survey Replication. Arch
Gen Psychiatry 2005;62:617-27.
237.Seeher K, Low L-F, Reppermund S, Brodaty H. Predictors and
outcomes for caregivers of people with mild cognitive
impairment: A systematic literature review. Alzheimers Dement
2013;9(3):346-55.
238.Epstein-Lubow G, Gaudiano B, Darling E, Hinckley M, Tremont
G, Kohn R, et al. Differences in depression severity in family
caregivers of hospitalized individuals with dementia and family
caregivers of outpatients with dementia. Am J Geriatr
Psychiatry 2012:20(9):815-9.
239.Peacock SC. The experience of providing end-of-life care to a
relative with advanced dementia: An integrative literature
review. Palliat Support Care 2013;11(2):155-68.
240.Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS,
Zhang S, et al. End-of-life care and the effects of bereavement
on family caregivers of persons with dementia. N Engl J Med
2003;349(20):1936-42.
241.Rubin R, White-Means S. Informal caregiving: Dilemmas of
sandwiched caregivers. J Fam Econ Issues 2009;30(3):252-67.
242.Chassin L, Macy JT, Seo D-C, Presson CC, Sherman SJ. The
association between membership in the sandwich generation
and health behaviors: A longitudinal study. J Appl Dev Psychol
2010; 31(1):38-46.
243.Do EK, Cohen SA, Brown MJ. Socioeconomic and demographic
factors modify the association between informal caregiving and
health in the Sandwich Generation. BMC Public Health
2014;14:362.
244.Fonareva I, Oken BS. Physiological and functional consequences
of caregiving for relatives with dementia. Int Psychogeriatr
2014 May;26(5):725-47.
245.von Känel R1, Mausbach BT, Ancoli-Israel S, Mills PJ, Dimsdale
JE, Patterson TL, Grant I. Positive affect and sleep in spousal
Alzheimer caregivers: A longitudinal study. Behav Sleep Med
2014 Sep 3;12(5):358-72.
246.Peng H-L, Chang Y-P. Sleep disturbance in family caregivers of
individuals with dementia: A review of the literature. Perspect
Psychiatr C 2012;49(2):135-46.
247. MetLife Mature Market Institute. The MetLife Study of
Alzheimer’s Disease: The Caregiving Experience; August 2006.
Available at: https://www.metlife.com/assets/cao/mmi/
publications/studies/mmi-alzheimers-disease-caregivingexperience-study.pdf. Accessed December 23, 2015.
248.Dassel KB, Carr DC. Does dementia caregiving accelerate
frailty? Findings from the Health and Retirement Study.
Gerontologist 2014. pii: gnu078. [Epub ahead of print].
249.Fredman L, Bertrand RM, Martire LM, Hochberg M, Harris EL.
Leisure-time exercise and overall physical activity in older
women caregivers and non-caregivers from the Caregiver-SOF
Study. Prev Med 2006;43:226-9.
250.Roepke SK, Allison M, Von Kanel R, Mausbach BT, Chattillion,
EA, Harmell AL, et al. Relationship between chronic stress and
carotid intima-media thickness (IMT) in elderly Alzheimer’s
disease caregivers. Stress 2012;15(2):121-9.
76
251.Gouin J, Glaser R, Malarkey WB, Beversdorf D, Kiecolt-Glaser J.
Chronic stress, daily stressors, and circulating inflammatory
markers. Health Psychol 2012;31(2):264-8.
252.von Kanel R, Mills PJ, Mausbach BT, Dimsdale JE, Patterson TL,
Ziegler MG, et al. Effect of Alzheimer caregiving on circulating
levels of C-reactive protein and other biomarkers relevant to
cardiovascular disease risk: A longitudinal study. Gerontology
2012;58(4):354-65.
253.von Kanel R, Mausbach BT, Dimsdale JE, Mills PJ, Patterson TL,
Ancoli-Israel S, et al. Effect of chronic dementia caregiving and
major transitions in the caregiving situation on kidney function:
A longitudinal study. Psychosom Med 2012;74(2);214-20.
254.Mausbach BT, Chattillion E, Roepke SK, Ziegler MG, Milic M, von
Kanel R, et al. A longitudinal analysis of the relations among
stress, depressive symptoms, leisure satisfaction, and
endothelial function in caregivers. Health Psychol
2012;31(4):433-40.
255.Chattillion EA, Mausbach BT, Roepke SK, von Kanel R, Mills PJ,
Dimsdale JE, et al. Leisure activities, caregiving demands and
catecholamine levels in dementia caregivers. Psychol Health
2012;27(10):1134-49.
256.von Kanel R, Dimsdale JE, Mills PJ, Ancoli-Israel S, Patterson TL,
Mausbach BT, et al. Effect of Alzheimer caregiving stress and age
on frailty markers interleukin-6, C-reactive protein, and
D-dimer. J Gerontol A Biol Sci Med Sci 2006;61(9):963-9.
257.Kiecolt-Glaser JK, Dura JR, Speicher CE, Trask OJ, Galser R.
Spousal caregivers of dementia victims: Longitudinal changes in
immunity and health. Psychosom Med 1991;53:345-62.
258.Kiecolt-Glaser JK, Marucha PT, Mercado AM, Malarkey WB,
Glaser R. Slowing of wound healing by psychological stress.
Lancet 1995;346(8984):1194-6.
259.Shaw WS, Patterson TL, Ziegler MG, Dimsdale JE, Semple SJ,
Grant I. Accelerated risk of hypertensive blood pressure
recordings among Alzheimer caregivers. J Psychosom Res
1999;46(3):215-27.
260.Vitaliano PP, Scanlan JM, Zhang J, Savage MV, Hirsch IB, Siegler
I. A path model of chronic stress, the metabolic syndrome, and
coronary heart disease. Psychosom Med 2002;64:418-35.
261.Mausbach BT, Roepke SK, Ziegler MG, Milic M, Von Kanel R,
Dimsdale JE, et al. Association between chronic caregiving
stress and impaired endothelial function in the elderly. J Am Coll
Cardiol 2010;55(23):2599-606.
262.Schubert CC, Boustani M, Callahan CM, Perkins AJ, Hui S,
Hendrie HC. Acute care utilization by dementia caregivers
within urban primary care practices. J Gen Intern Med
2008;23(11):1736-40.
263.Zhu CW, Scarmeas N, Ornstein K, Albert M, Brandt J, Blacker D,
et al. Health-care use and cost in dementia caregivers:
Longitudinal results from the Predictors Caregiver Study.
Alzheimers Dement 2015;11(4):444-54.
264.Christakis NA, Allison PD. Mortality after the hospitalization of a
spouse. N Engl J Med 2006;354:719-30.
265.Perkins M, Howard VJ, Wadley VG, Crowe M, Safford MM, Haley
WE, et al. Caregiving strain and all-cause mortality: Evidence
from the REGARDS Study. J Gerontol B Psychol Sci Soc Sci
2013;68(4):504-12.
266.Gitlin LN, Hodgson N. Caregivers as therapeutic agents in
dementia care: The evidence-base for interventions supporting
their role. In: Gaugler JE, Kane RL, eds. Family caregiving in the
new normal. Philadelphia, Pa.: Elsevier, Inc.; 2015: p. 305-56.
267.Maslow K. Translating Innovation to Impact: Evidence-Based
Interventions to Support People with Alzheimer’s Disease and
their Caregiver at Home and in the Community. Washington,
D.C.: Administration on Aging; 2012. Available at: http://www.
aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/
TranslatingInnovationtoImpactAlzheimersDisease.pdf. Accessed
November 6, 2015.
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
268.Rosalynn Carter Institute for Caregiving. Caregiver Intervention
Database. Available at: http://www.rosalynncarter.org/caregiver_
intervention_database/. Accessed: December 6, 2015.
269.Menne HL, Bass DM, Johnson JD, Primetica B, Kearney KR, Bollin
S, Molea MJ, Teri L. Statewide implementation of “reducing
disability in Alzheimer’s disease”: Impact on family caregiver
outcomes. J Gerontol Soc Work 2014;57(6-7):626-39.
270.Teri L, McKenzie G, Logsdon RG, McCurry SM, Bollin S, Mead J,
Menne H. Translation of two evidence-based programs for
training families to improve care of persons with dementia.
Gerontologist 2012;52(4):452-9.
271.Gitlin LN, Jacobs M, Earland TV. Translation of a dementia
caregiver intervention for delivery in homecare as a
reimbursable Medicare service: Outcomes and lessons learned.
Gerontologist 2010;50(6):847-54.
272.Burgio LD, Collins IB, Schmid B, Wharton T, McCallum D,
Decoster J. Translating the REACH caregiver intervention for
use by area agency on aging personnel: The REACH OUT
program. Gerontologist 2009;49(1):103-16.
273.Mittelman MS, Bartels SJ. Translating research into practice:
Case study of a community-based dementia caregiver
intervention. Health Aff 2014;33(4):587-95.
274.Cheung KS, Lau BH, Wong PW, Leung AY, Lou VW, Chan GM,
Schulz R. Multicomponent intervention on enhancing dementia
caregiver well-being and reducing behavioral problems among
Hong Kong Chinese: A translational study based on REACH II.
Int J Geriatr Psychiatry 2015:30(5):460-9.
275.Samia LW, Aboueissa AM, Halloran J, Hepburn K. The Maine
Savvy Caregiver Project: Translating an evidence-based
dementia family caregiver program within the RE-AIM
Framework. J Gerontol Soc Work 2014;57(6-7):640-61.
276.Lykens K, Moayad N, Biswas S, Reyes-Ortiz C, Singh KP. Impact
of a community based implementation of REACH II program for
caregivers of Alzheimer’s patients. PLoS One 2014;9(2):e89290.
277.Menne HL, Bass DM, Johnson JD, Kearney KR, Bollin S, Teri L.
Program components and outcomes of individuals with
dementia: Results from the Replication of an evidence-based
program. J Appl Gerontol 2015. pii: 0733464815591212. [Epub
ahead of print].
278.Primetica B, Menne HL, Bollin S, Teri L, Molea M. EvidenceBased Program replication: Translational activities, experiences,
and challenges. J Appl Gerontol 2015;34(5):652-70.
279.Boots LM, de Vugt ME, van Knippenberg RJ, Kempen GI, Verhey
FR. A systematic review of internet-based supportive
interventions for caregivers of patients with dementia. Int J
Geriatr Psych 2015;29(4):331-44.
280.Czaja SJ, Loewenstein D, Schulz R, Nair SN, Perdomo D. A
videophone psychosocial intervention for dementia caregivers.
Am J Geriatr Psychiatry 2013;21(11):1071-81.
281.Gaugler JE, Potter T, Pruinelli L. Partnering with caregivers. Clin
Geriatr Med 2014;30(3):493-515.
282.Gitlin LN, Marx K, Stanley IH, Hodgson N. Translating evidencebased dementia caregiving interventions into practice:
State-of-the-science and next steps. Gerontologist
2015;55(2):210-26.
283.Wethington E, Burgio LD. Translational research on caregiving:
Missing links in the translation process. In Gaugler JE, Kane RL,
eds. Family caregiving in the new normal. Philadelphia, Pa.:
Elsevier, Inc; 2015: p. 193-210.
284.Zarit SH. Empirically supported treatment for family caregivers.
In: Qualls SH, Zarit SH, eds. Aging families and caregiving.
Hoboken, N.J.: John Wiley & Sons, Inc.; 2009: p. 131-54.
285.Zarit SH, Lee JE, Barrineau MJ, Whitlatch CJ, Femia EE. Fidelity
and acceptability of an adaptive intervention for caregivers: An
exploratory study. Aging Ment Health 2013;17(2):197-206.
286.Gonyea JG, López LM, Velásquez EH. The effectiveness of a
culturally sensitive cognitive behavioral group intervention for
Latino Alzheimer’s caregivers. Gerontologist 2014. pii: gnu045.
[Epub ahead of print].
287.Llanque SM, Enriquez M. Interventions for Hispanic caregivers
of patients with dementia: A review of the literature. Am J
Alzheimers Dis Other Demen 2012;27(1):23-32.
288.Kally Z, Cote SD, Gonzalez J, Villarruel M, Cherry DL, Howland
S, Higgins M, Connolly L, Hepburn K. The Savvy Caregiver
Program: Impact of an evidence-based intervention on the
well-being of ethnically diverse caregivers. J Gerontol Soc Work
2014;57(6-7):681-93.
289.Kally Z, Cherry DL, Howland S, Villarruel M. Asian Pacific
Islander dementia care network: A model of care for
underserved communities. J Gerontol Soc Work 2014;57(67):710-27.
290.Napoles AM, Chadiha L, Eversley R, Moreno-John G. Reviews:
Developing culturally sensitive dementia caregiver
interventions: Are we there yet? Am J Alzheimers Dis Other
Dement 2010;25:389-406.
291.Jones AL, Dwyer LL, Bercovitz AR, Strahan GW. The National
Nursing Home Survey: 2004 Overview. Vital Health Stat 13
2009;(167):1-155.
292.Kramer NA, Smith MC. Training nursing assistants to care for
nursing home residents with dementia. In: Molinari V, editor.
Professional psychology in long- term care. New York, N.Y.:
Hatherleigh Press; 2000: p. 227-56.
293.McCabe MP, Davison TE, George K. Effectiveness of staff
training programs for behavioral problems among older people
with dementia. Aging Ment Health 2007;11(5):505-19.
294.Beck C, Ortigara A, Mercer S, Shue V. Enabling and empowering
certified nursing assistants for quality dementia care. Int J
Geriatr Psychiatry 1999;14(3):197-211.
295.Institute of Medicine. Retooling for an Aging America: Building
the Health Care Workforce. Washington, D.C.: The National
Academies Press 2008. Available at: http://www.nap.edu.
Accessed November 6, 2015.
296.Stone RI. Factors affecting the future of family caregiving in the
United States. In JE Gaugler, RL Kane,eds. Family caregiving in
the new normal. San Diego, CA: Elsevier, Inc; 2015: p. 57-77.
297.Spector A, Orrell M, Goyder J. A systematic review of staff
training interventions to reduce the behavioural and
psychological symptoms of dementia. Ageing Res Rev
2013;12(1):354-64.
298.Eldercare Workforce Alliance. Geriatrics Workforce Shortage: A
Looming Crisis for our Families. Washington, D.C.: Eldercare
Workforce Alliance; 2012.
299.The American Geriatrics Society. The Geriatrics Workforce
Policy Studies Center (GWPS). Available at: http://www.
americangeriatrics.org/advocacy_public_policy/gwps/gwps_
faqs/id:3188. Accessed January 25, 2016.
300.Brody AA, Galvin JE. A review of interprofessional dissemination
and education interventions for recognizing and managing
dementia. Gerontol Geriatr Educ 2013;34(3):225-56.
301.McCaffrey R, Tappen RM, Lichtstein DM, Friedland M.
Interprofessional education in community-based Alzheimer’s
disease diagnosis and treatment. J Interprof Care
2013;27(6):534-6.
302.Köhler L, Meinke-Franze C, Hein J, Fendrich K, Heymann R,
Thyrian JR, Hoffmann W. Does an interdisciplinary network
improve dementia care? Results from the IDemUck-study. Curr
Alzheimer Res 2014;11(6):538-48.
303.Noel MA, Kaluzynski TS, Templeton VH. Quality dementia care:
Integrating caregivers into a chronic disease management
model. J Appl Gerontol 2015. pii: 0733464815589986. [Epub
ahead of print].
Appendices
77
304.Tan ZS, Jennings L, Reuben D. Coordinated care management
for dementia in a large academic health system. Health Aff
2014;33(4):619-25.
305.Callahan CM, Sachs GA, Lamantia MA, Unroe KT, Arling G,
Boustani MA. Redesigning systems of care for older adults with
Alzheimer’s disease. Health Aff 2014;33(4):626-32.
306.French DD, LaMantia MA, Livin LR, Herceg D, Alder CA,
Boustani MA. Healthy Aging Brain Center improved care
coordination and produced net savings. Health Aff
2014;33(4):613-8.
307.Borson S, Chodosh J. Developing dementia-capable health care
systems: A 12-step program. Clin Geriatr Med 2014;30(3):395-420.
308.Reuben DB, Evertson LC, Wenger NS, Serrano K, Chodosh J,
Ercoli L, Tan ZS. The University of California at Los Angeles
Alzheimer’s and Dementia Care program for comprehensive,
coordinated, patient-centered care: Preliminary data. J Am
Geriatr Soc 2013;61(12):2214-8.
309.Odenheimer G, Borson S, Sanders AE, Swain-Eng RJ, Kyomen
HH, Tierney S, et al. Quality improvement in neurology:
Dementia management quality measures (executive summary).
Am J Occup Ther 2013;67(6):704-10.
310.LaMantia MA, Alder CA, Callahan CM, Gao S, French DD,
Austrom MG, et al. The Aging Brain Care Medical Home:
Preliminary data. J Am Geriatr Soc 2015;63(6):1209-13.
311.Yang Z, Zhang K, Lin PJ, Clevenger C, Atherly A. A longitudinal
analysis of the lifetime cost of dementia. Health Serv Res
2012;47(4):1660-78.
312.Yang Z, Levey A. Gender differences: A lifetime analysis of the
economic burden of Alzheimer’s disease. Women’s Health Issues
2015;25(5):436-40.
313.Kelley AS, McGarry K, Gorges R, Skinner JS. The burden of
health care costs for patients with dementia in the last 5 years
of life. Ann Intern Med 2015;163:729-36.
314.Rudolph JL, Zanin NM, Jones RN, Marcantonio ER, Fong TG,
Yang FM, et al. Hospitalization in community-dwelling persons
with Alzheimer’s disease: Frequency and causes. J Am Geriatr
Soc 2010;58(8):1542-8.
315.Medicare. Glossary. Medicare: The Official U.S. Government Site
for Medicare. Available at: http://www.medicare.gov/
HomeHealthCompare/Resources/Glossary.html. Accessed
December 14, 2015.
316.Feng Z, Coots LA, Kaganova Y, Wiener JM. Hospital and ED use
among Medicare beneficiaries with dementia varies by setting
and proximity to death. Health Aff 2014;33(4):683-90.
317. Healthy People 2020. Dementias Including Alzheimer’s Disease.
Available at: http://www.healthypeople.gov/2020/topicsobjectives/topic/dementias-including-alzheimers-disease/
national-snapshot. Revised August 25, 2014. Accessed
December 14, 2015.
318.Davydow DS, Zibin K, Katon WJ, Pontone GM, Chwastiak L, Langa
KM, Iwashyna TJ. Neuropsychiatric disorders and potentially
preventable hospitalizations in a prospective cohort study of older
Americans. J Gen Intern Med 2014;29(10):1362-71.
319.Leibson CL, Hall Lon K, Ransom JE, Robers RO, Hass SL, Duhig
AM, Smith CY, Emerson JA, Pankratz VS, Petersen RC. Direct
medical costs and source of cost differences across the
spectrum of cognitive decline: A population-based study.
Alzheimers Dement 2015;11(8):917-32.
320.Suehs BT, Davis CD, Alvir J, van Amerongen D, Patel NC, Joshi
AV, et al. The clinical and economic burden of newly diagnosed
Alzheimer’s disease in a Medicare Advantage population. Am J
Alzheimers Dis Other Dement 2013;28(4):384-92.
321.Geldmacher DS, Kirson NY, Birnbaum HG, Eapen S, Kantor E,
Cummings AK, Joish VN. Pre-diagnosis excess acute care costs
in Alzheimer’s patients among a U.S. Medicaid population. Appl
Health Econ Health Policy 2013;11(4):407-13.
78
322.Stark SL, Roe CM, Grant EA, Hollingsworth H, Benzinger TL,
Fagan AM, Buckles VD, Morris JC. Preclinical Alzheimer’s
disease and risk of falls. Neurology 2013;81(5):437-43.
323.Lin PJ, Fillit HM, Cohen JT, Neumann PJ. Potentially avoidable
hospitalizations among Medicare beneficiaries with Alzheimer’s
disease and related disorders. Alzheimers Dement 2013;9(1):30-8.
324.Patel A, Parikh R, Howell EH, Hsich E, Landers SH, Gorodeski
EZ. Mini-Cog performance: Novel marker of post discharge risk
among patients hospitalized for heart failure. Circ Heart Fail
2015;8(1):8-16.
325.Genworth Financial, Inc. Genworth 2015 Cost of Care Survey.
Home Care Providers, Adult Day Health Care Facilities, Assisted
Living Facilities and Nursing Homes. Available at: https://www.
genworth.com/dam/Americas/US/PDFs/Consumer/corporate/
130568_040115_gnw.pdf. Accessed November 6, 2015.
326.Johnson RW, Wiener JM. A profile of frail older Americans and
their caregivers. Washington, D.C.: Urban Institute; February 2006.
327.Dwyer LL, Harris-Kojetin LD, Valverde RH. Differences in Adult
Day Services Center Participant Characteristics by Center
Ownership: United States, 2012. NCHS Data Brief, No. 164;
September 2014.
328.Dwyer LL, Harris-Kojetin LD, Valverde RH. Differences in Adult
Day Services Center Characteristics by Center Ownership:
United States, 2012. NCHS Data Brief, No. 165; September 2014.
329.Mollica R, Houser A, Ujvari K. Assisted living and residential care
in the states in 2010. AARP Public Policy Institute; 2012.
330.Sengupta M, Harris-Kojetin LD, Caffrey C. Variation in
Residential Care Community Resident Characteristics, by Size of
Commnity: United States, 2014. NCHS Data Brief, No. 223.
November 2015.
331.Caffrey C, Harris-Kojetin L, Rome V, Sengupta M. Variation in
Operating Characteristics of Residential Care Communities by
Size of Community: United States, 2014. NCHS Data Brief,
No. 222. November 2015.
332.American Health Care Association. LTC Stats: Nursing Facility
Operational Characteristics Report. Table 5: Nursing Facility
Beds in Dedicated Special Care Units; September 2014.
333.American Health Care Association. LTC Stats: Nursing Facility
Operational Characteristics Report. Table 5: Nursing Facility
Beds in Dedicated Special Care Units; June 2013.
334.Callahan CM, Arling G, Tu W, Rosenman MB, Counsell SR, Stump
TE, Hendrie HC. Transitions in care among older adults with and
without dementia. J Am Geriatr Soc 2012;60(5):813-20.
335.Gozalo P, Teno JM, Mitchell SL, Skinner J, Bynum J, Tyler D, et
al. End-of-life transitions among nursing home residents with
cognitive issues. N Engl J Med 2011;365(13):1212-21.
336.Teno JM, Mitchell SL, Skinner J, Kuo S, Fisher E, Intrator O, et al.
Churning: The association between health care transitions and
feeding tube insertion for nursing home residents with advanced
cognitive impairment. J Palliat Med 2009;12(4):359-62.
337. Teno J, Meltzer DO, Mitchell SL, Fulton AT, Gozalo P, Mor V.
Type of attending physician influenced feeding tube insertions
for hospitalized elderly people with severe dementia. Health Aff
2014;33(4):675-82.
338.Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC, Morden
NE, et al. Change in end-of-life care for Medicare beneficiaries:
Site of death, place of care, and health care transitions in 2000,
2005, and 2009. JAMA 2013;309(5):470-7.
339.Gozalo P, Plotzke M, Mor V, Miller SC, Teno JM. Changes in
medicare costs with the growth of hospice care in nursing
homes. N Engl J Med 2015;372:1823-31.
340.Eiken S, Sredl K, Burwell B, Saucier P. Medicaid expenditures for
long-term services and supports (LTSS) in FY 2013: Home and
community-based services were a majority of LTSS spending.
Truven Health Analytics. June 30, 2015.
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
341.MetLife Mature Market Institute. Market Survey of Long-Term
Care Costs: The 2012 MetLife Market Survey of Nursing Home,
Assisted Living, Adult Day Services, and Home Care Costs. New
York, N.Y.: Metropolitan Life Insurance Company; 2012.
342.Jacobson G, Huang J, Neuman T, Smith KE. Income and Assets
of Medicare Beneficiaries, 2013-2030. The Henry J. Kaiser
Family Foundation Issue Brief. January 2014.
343.HHS Office of the Assistant Secretary for Planning and Evaluation
Office of Disability, Aging and Long-Term Care Policy. Long-Term
Care Insurance. ASPE Research Brief. June 2012.
344.Stone RI, Benson WF. Financing and organizing health and
long-term care services for older populations. In: Prohaska TR,
Anderson LA, Binstock RH. Public health for an aging society.
Johns Hopkins University Press: Baltimore, MD; 2012.
345.Kaiser Commission on Medicaid and the Uninsured. Long-Term
Services and Supports in the Financial Alignment
Demonstrations for Dual Eligible Beneficiaries. Washington,
D.C.: Henry J. Kaiser Family Foundation; November 2013.
346.Moody’s Investors Service. Special Comment: Long-Term Care
Insurance: Sector Profile; September 18, 2012.
347.Gilligan AM, Malone DC, Warholak TL, Armstrong EP. Health
disparities in cost of care in patients with Alzheimer’s disease: An
analysis across 4 state Medicaid populations. Am J Alzheimers
Dis Other Dement 2013;28(1):84-92.
348.Klug MG, Wagstrom Halaas G, Peterson M-L. North Dakota
Assistance Program for Dementia Caregivers lowered
utilization, produced savings and increased empowerment.
Health Aff 2014;33(4):605-12.
349.Long KH, Moriarty JP, Mittelman MS, Foldes SS. Estimating the
potential cost savings from the New York University Caregiver
Intervention in Minnesota. Health Aff 2014;33(4):596-4.
350.U.S. Centers for Medicare and Medicaid Services. Hospice
Center. Available at: http://www.cms.gov/Medicare/MedicareFee-for-Service-Payment/Hospice/Medicare_Hospice_Data.
html. Accessed November 6, 2015.
351. Delavande A, Hurd MD, Martorell P, Langa KM. Dementia and
out-of-pocket spending on health care services. Alzheimers
Dement 2013;9(1):19-29.
352. Kelley AS, McGarry K, Gorges R, Skinner JS. The burden of
health care costs for patients with dementia in the last 5 years
of life. Ann Intern Med 2015;163(10):729-36.
353. U.S. Department of Agriculture. Household food security survey
module: Six-item short form. Available at: http://www.ers.usda.
gov/datafiles/Food_Security_in_the_United_States/Food_
Security_Survey_Modules/short2012.pdf. Accessed February
26, 2016.
354. American Association for Long-Term Care Insurance. Longterm care insurance facts-statistics. Westlake Village, CA; 2015.
Available at: http://www.aaltci.org/long-term-care-insurance/
learning-center/fast-facts.php. Accessed December 23, 2015.
355.Brookmeyer R, Gray S, Kawas C. Projections of Alzheimer’s
disease in the United States and the public health impact of
delaying disease onset. Am J Public Health 1998;88:1337-42.
356.National Alliance for Caregiving and AARP, Caregiving in the
U.S., November 2009. Available at: http://assets.aarp.org/
rgcenter/il/caregiving_09_fr.pdf. Accessed November 6, 2015.
357.Amo PS, Levine C, Memmott MM. The economic value of
informal caregiving. Health Aff 1999;18;182-8.
358.U.S. Department of Labor, Bureau of Labor Statistics.
Employment, Hours, and Earnings from the Current
Employment Statistics Survey. Series 10-CEU 6562160008,
Home Health Care Services (NAICS code 6216), Average Hourly
Earnings, July 2015. Available at: www.bls.gov/ces. Accessed
December 28, 2015.
359.Albert SM, Schulz R. The MetLife Study of working caregivers
and employer health care costs. New York, N.Y.: MetLife Mature
Market Institute; 2010.
360.U.S. Centers for Medicare and Medicaid Services, Center for
Strategic Planning, Health Expenditures by State of Residence
1991-2009. Available at: www.cms.gov/Research-StatisticsData-and-Systems/Statistics-Trends-and-Reports/
NationalHealthExpendData/
NationalHealthAccountsStateHealthAccountsResidence.html.
Accessed January 22, 2016.
361.Shriver M. The Shriver Report: A Woman’s Nation Takes on
Alzheimer’s. Chicago, Ill.: Alzheimer’s Association; 2010.
Appendices
79
80
Alzheimer’s Association. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2016;12(4).
The Alzheimer’s Association acknowledges the contributions of
Joseph Gaugler, Ph.D., Bryan James, Ph.D., Tricia Johnson, Ph.D.,
Ken Scholz, Ph.D., and Jennifer Weuve, M.P.H., Sc.D., in the
preparation of 2016 Alzheimer’s Disease Facts and Figures.
81
The Alzheimer’s Association is the leading voluntary health organization
in Alzheimer’s care, support and research. Our mission is to eliminate
Alzheimer’s disease through the advancement of research; to provide
and enhance care and support for all affected; and to reduce the risk of
dementia through the promotion of brain health.
Our vision is a world without Alzheimer’s disease.®
Alzheimer’s Association
National Office
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
Alzheimer’s Association
Public Policy Office
1212 New York Ave., N.W., Suite 800
Washington, DC 20005-6105
800.272.3900
alz.org
®
©2016 Alzheimer’s Association. All rights reserved.
This is an official publication of the Alzheimer’s
Association but may be distributed by unaffiliated
organizations and individuals. Such distribution does
not constitute an endorsement of these parties or
their activities by the Alzheimer’s Association.